Diagnostic test coming soon for ME

http://www.youtube.com/watch?v=nfLoiqf6I4o

NICE GUIDELINE QUESTIONNAIRE

MAY BE REPOSTED

NICE GUIDELINE QUESTIONNAIRE

If you haven't yet voted in the MEA website on-line questionnaire about the NICE guideline please do so - this poll will close at the end of December. The results so far can also be accessed via the questionnaire.

ITV 'THIS MORNING' ITEM ON THE DEATH OF LYNN GILDERDALE

ITV devoted almost 10 minutes to this subject last week and the coverage from Phillip Schofield and Ruth Langsford was very sympathetic. The clip can now be viewed via the 'Quick Links' section on the MEA website home page.

MEA website: http://www.meassoci ation.org. uk

A NICE DILEMMA?

A NICE DILEMMA?

Margaret Williams 15th December 2008

ME/CFS in the US

In the Summer 2008 issue of The CFIDS Chronicle published by The CFIDS
Association of America, Anthony Komaroff, Professor of Medicine at Harvard,
editor-in-chief of Harvard Health Publications and senior physician at
Brigham and Womens’ Hospital, Boston (who has published more than 230
research papers on ME/CFS) wrote an article listing the top ten biomedical
research findings in ME/CFS.

These are summarised at
http://www.prohealt h.com/library/ showarticle. cfm?libid= 14063 and include
evidence that (1) many patients with ME/CFS have no diagnosable psychiatric
disorder and that ME/CFS is not a form of depression; (2) there is a state
of chronic, low-grade immune activation, with evidence of activated T cells
and evidence of genes reflecting immune activation, as well as evidence of
increased levels of cytokines; (3) there is substantial evidence of
poorly-functioning NK cells (white blood cells that are important in
fighting viral infections); (4) there is evidence of white and grey matter
abnormalities in the brain; (5) there is evidence of abnormalities in brain
metabolism (and evidence of dysfunction of energy metabolism in the
mitochondria) ; (6) there is evidence of abnormalities in the neuroendocrine
system, particularly in the HPA axis but also in the hypothalamic- prolactin
axis and in the hypothalamic- growth hormone axis; (7) there is evidence of
cognitive difficulties, especially with information processing, memory
and/or attention; (8) there is evidence of abnormalities in the autonomic
nervous system (including a failure to maintain blood pressure, abnormal
responses of the heart rate, and unusual pooling of blood in the legs, as
well as low levels of blood volume); (9) there is evidence of disordered
gene expression, especially in those genes that are important in energy
metabolism and in genes connected to HPA axis activity, to the sympathetic
nervous system and to the immune system; (10) there is evidence of frequent
infection with viruses, especially herpesvirus and enteroviruses.

Former top ME/CFS researcher at the US Centres for Disease Control (CDC), Dr
Suzanne Vernon, stated on 5th December 2008 that there are now more than
5,000 peer-reviewed articles in the biomedical literature that tell us a lot
about the disrupted biology of ME/CFS, about what happens to the immune and
endocrine systems and to the autonomic and central nervous systems
(http://www.prohealt h.com/library/ showArticle. cfm?libid= 14167 ). When asked
why this information had not been harnessed, her reply was that there is no
good reason why it has not been translated to the medical community, saying:
“no-one is filling that gap between the bench research and the bedside”. She
noted that ME/CFS is “ultimately described as immune dysregulation and
neuroendocrine disturbance”. Dr Vernon stated that “infection is the key to
initiating/triggeri ng ME/CFS and the immune system is central to sustaining
(it). Hormones are critical in modulating the immune response. A unifying
theme is disturbed cell signalling and cell metabolism. We know that low
cortisol occurs in some patients with ME/CFS. Cortisol is a critical
molecule for regulating the HPA axis and is essential for modulating the
immune response”.

The results of a new study by Courjaret et al are unambiguous and
straightforward: “no direct relationship between the chronic fatigue
syndrome and personality disorders was shown” (J Psychosom Res
2009:66:13-20) .

ME/CFS in the UK

The Courjaret study will doubtless cut no ice with those who are committed
ME/CFS deniers: on 12th March 2008, one such denier (Frank Furedi), in an
item entitled “The seven deadly personality disorders” stated: “Sloth has
been medicalised, too. The creation of such conditions as chronic fatigue
syndrome invites people to make sense of their lassitude through a medical
label”

(http://www.spiked- online.com/ index.php? /site/article/ 4862/ ) .

As customary, when any biomedical aspects of ME/CFS are highlighted
internationally, they fall on deaf ears in the UK, a case in point being the
current issue of PULSE, which publishes the views of psychiatrist Dr
Christopher Bass under the heading: “Need to know – somatoform disorders”.
In his article, Bass specifically includes “CFS” as a somatoform disorder.
PULSE is a medical trade magazine widely distributed throughout the NHS and
Dr Bass is a liaison psychiatrist who, with Simon Wessely, worked at Kings
College Hospital before moving to Oxford (another hotbed of ME denial, where
psychiatrist Michael Sharpe worked before he moved to Edinburgh).

Bass makes unsubstantiated claims and he repeats, vacuously, the Wessely
School mantra, for example: “A cognitive behavioural therapy approach is
helpful in patients with somatoform disorders because it addresses the
predisposing, precipitating and perpetuating factors. CBT has been shown in
many (sic) trials to be helpful in patients with medically unexplained
symptoms such as chronic fatigue syndrome. Most patients with medically
unexplained symptoms lasting for more than six months will have a somatoform
disorder. Psychiatrists tend to use terms such as somatoform disorders
while GPs and non-psychiatrist physicians use terms like chronic fatigue
syndrome. The official diagnostic criteria for somatoform disorders—which
include hypochondriasis, recently renamed as health anxiety to reduce stigma
-- include symptoms that are caused or maintained by psychosocial factors”.

In his PULSE article, Bass states that CBT has been shown to be helpful in
“many” trials in patients with “CFS”, but even NICE itself in its now
infamous Guideline on “CFS/ME” (CG53) could find only five such trials and
it is not difficult to demonstrate that those five trials were
methodologically flawed, a fact acknowledged by the team at the Centre for
Reviews and Dissemination (CRD) at York who actually carried out the
systematic review of the literature specifically to support the work of NICE
on “CFS/ME”.

CBT/GET does not prevent death from ME/CFS

There have been a number of high profile deaths from ME/CFS in the UK. There
can be few in the international ME community who have forgotten the
harrowing death three years ago of 32 year old Sophia Mirza, who was
forcibly but illegally detained under the Mental Health Act and who
subsequently died from ME/CFS and whose autopsy revealed severe inflammation
of the dorsal roots in her spinal cord. These are the sensory nerve roots,
so she must have been in considerable pain for many years.

The most recent death is that of Lynn Gilderdale who died on 4th December
2008 aged 31, having suffered extremely severe ME from the age of 14. Lynn
had been on a very potent combination of opioid and neuropathic pain
medication via a subcutaneous pump and, sadly, her mother was arrested on
suspicion of murder, so although Lynn had made a Will stating her wishes
that her organs and tissues should be used after her death, her mother was
in police custody and was unable to ensure that Lynn’s wishes were carried
out at the time. The only organ that was retrieved immediately after Lynn’s
death was the brain, and this was sent to Kings College Hospital, London
(where Simon Wessely works). This exceptionally tragic case gained much
media coverage, not only in the UK but also in countries including South
America, the Czech Republic; Spain, Belgium, CNN Europe and Croatia.

Other recent deaths include that of Sue Firth from Yorkshire, who left two
teenage sons, and Nicola McNougher from Bromsgrove, who also left two young
sons. Like Lynn Gilderdale and Mrs Firth, Mrs McNougher suffered from severe
ME; she was unable to tolerate the degree of pain and illness, so she went
to Switzerland and chose to end her life there. Notably, Mrs McNougher was a
psychotherapist; as such, she would, one imagines, have had the insight to
practice cognitive behavioural techniques to her own advantage – if, that
is, such techniques actually work. The evidence is that they do not work.

If CBT is so successful, where, then, was the involvement of the Wessely
School psychiatrists, especially Professors Simon Wessely and Peter White,
and even Professor Bass himself, in these tragic cases? Peter White is on
record as affirming that CBT/GET can cure “CFS/ME” (“Is full recovery
possible after CBT for CFS?”; Hans Knoop, Peter White et al; Psychotherapy &
Psychosomatics 2007:76:171- 176). Professor Michael Sharpe is also on record
as asserting: “There is evidence that psychiatric treatment can reduce
disability in CFS. In some cases, it can be curative” (“Psychiatric
Management of Post Viral Fatigue Syndrome”; Michael Sharpe; British Medical
Bulletin 1991:47:4:989- 1005) and Simon Wessely himself is also on record as
confirming that significantly more patients met the criteria for full
recovery and that: “seven (23%) of the CBT patients were deemed completely
recovered” (“Long-term outcome of cognitive behavioural therapy versus
relaxation therapy for chronic fatigue syndrome: a five-year follow up
study”; Deale A, Chalder T, Wessely S et al; Am J Psychiat
2001:158:2038- 2042). For the record, that same year (2001) Wessely is also
on record as stating that CBT is not “remotely curative” (Editorial; JAMA
19th September 2001:286:11) . Wessely does not clarify how the same
intervention can result in complete recovery even though it is not remotely
curative.

None of these trials, of course, included anyone who was severely affected
by ME/CFS; indeed, it is entirely possible that there was not a single
patient with ME/CFS in any of those studies, since most of the trials used
the Oxford criteria and those criteria expressly exclude people with
neurological disorders but do specifically include those with psychiatric
disorders (which often have “fatigue” as a problematic symptom).

NICE “Guidelines” are to become legally enforceable in 2009

In an attempt to justify its reliance on those few (and methodologically
flawed) RCTs in its Guideline on “CFS/ME”, it is anticipated that on 11th
and 12th February 2009 NICE will have to explain its reasons for doing so
before a High Court Judge, more particularly so given the recent
announcement that “GPs will have to prove they follow NICE Guidelines or
face the possibility of suspension, prosecution or the closure of their
practice. Baroness Young, chair of the Care Quality Commission, revealed
that guidance from NICE would become legally enforceable from 2009, with
doctors to face tough annual checks on their compliance. Baroness Young
told last week’s NICE annual conference that policing clinical guidance was
set to be a key part of the CQC’s work, and admitted the commission had been
handed ‘draconian’ powers by Ministers” (PULSE: “Threat of legal action if
GPs fail to follow NICE”; Nigel Praities; 11th December 2008).

Before it can start wielding these draconian powers in relation to ME/CFS
patients, NICE may be required to explain to the satisfaction of the Judge
why it relied upon an evidence-base of just one systematic review that
comprised only 18 clinical trials, not all of which were random controlled
trials (RCTs), of which just five were RCTs of CBT and a further five were
RCTs of graded exercise therapy, making a grand total of just 10 RCTs, all
on a patient base of just 1,448 patients who may or may not have had ME/CFS.

This should be compared with NICE’s Clinical Guideline on multiple sclerosis
(CG8), which had an evidence-base that contained 80 systematic reviews of
approximately 1,107 RCTs on a patient base of 89,230 MS patients. It will
be recalled that the Government states there are 240,000 with “CFS/ME” in
the UK, which far exceeds the number of people with MS.

Clearly there was insufficient evidence upon which to predicate a national
Guideline for “CFS/ME”, so – according to the rules – NICE should have
chosen the OIR option (Only in Research), which would have been the correct
procedure for the Guideline Development Group (GDG) to have followed. It
chose not to do so, thereby fuelling the perception that the GDG was intent
on recommending CBT/GET whatever the evidence or lack of it.

Some failures by NICE to adhere to its own Guideline Development Manual

It is anticipated that NICE will also be required to explain to the Judge
why it failed to adhere to its own Guideline Development Manual in the
production of its Clinical Guideline 53 on “CFS/ME” in numerous other
important areas.

For example, there was the unfortunate “misprint” in the printed version of
the Questionnaire that respondent stakeholders were required to complete
prior to the publication of the draft Guideline, a “misprint” that
potentially skewed the answers to over one third of the questions in that
the instructions were misleadingly worded and seemed deliberately ambiguous,
even to a clear-thinking person, let alone an ME/CFS patients with cognitive
difficulties. Perhaps expediently, the instructions for the following
section (starting with question 62 and relating to “Behavioural Approaches”)
changed – without guidance or notification – from choosing to tick
“inappropriate” in the previous section to choosing to tick “appropriate” in
that section. Without having attention drawn to this important change, few
people with cognitive problems such as are found in ME/CFS would have
spotted this hurdle. When notified of this, respondents were given just two
days by Nancy Turnbull to correct their responses (see email sent on 3rd May
2006 at 2.26pm from Nancy Turnbull to Participants) , which was an
impossibility, since many completed Questionnaires were likely to have been
posted back by then. NICE did not seem concerned, but perhaps this was
because the outcome was a forgone conclusion, so whatever information
patients submitted was of little value to the GDG, who are on record as
affirming that patients’ evidence was deemed to be “biased” (J Inf 2007:
55:6:569-571) and therefore of little value, which is in direct
contradiction to the Expert Patient programme rolled out in 2001 by NICE’s
own paymaster, the Department of Health, in which patients with long-term
diseases are to be acknowledged as experts in their own conditions).

Then there was the curious matter of NICE quietly dropping the required
second consultation on the draft Guideline; although NICE instituted a
nominal “consultation” period (which for some reason was over the 2005/6
Christmas/New Year break) on their wish to drop the second consultation,
many stakeholders were unaware of it, even though they were required to be
notified of it by NICE. The Manual is unambiguous that Guidelines in
preparation that were beyond a certain stage of development (as was the case
with CG53) were to continue under the old rules (which stipulated not one
but two consultations) . This did not happen with CG53.

Introduction of “Consensus” for CG53

A notable innovation in the production of CG53 was the use of “consensus”
by the GDG (said to be because the evidence-base was so poor). By letter
dated 26th January 2006, a NICE Communications Executive (Sarita Tamber)
confirmed: “With regard to the CFS/ME guideline, because of the lack of
evidence it was decided to use formal consensus methods with the GDG. As you
are aware, NICE guidelines are based on research evidence but NICE is aware
of the lack of evidence on CFS/ME”. Consensus methodology is rigorously
defined, but in the case of CG53, NICE decided to use its own “modification”
that was specially formulated for this particular Guideline (as confirmed by
Dr Mercia Page of NICE in her evidence to the Gibson Inquiry). The person
who advised the GDG about the consensus methodology to be used was Professor
Rosalind Raine, Professor of Health Services Research at University College,
London. Professor Raine’s published views on “CFS/ME” just happen to be
that it is a behavioural disorder that should be managed by CBT/GET. Her
views are to be found, for example, in the BMJ 2002:325:1082 (“Systematic
review of mental health interventions for patients with common somatic
symptoms”) and the BMJ 2004:328:1354- 1357 (“General practitioners’
perception of CFS and beliefs about its management”).

After reviewing many of the same studies assessed by the York Review team
for “CFS”, Raine’s main conclusion in her 2002 paper is that patients in
secondary care with chronic fatigue syndrome may benefit from CBT.

In her 2004 paper, CBT was described as “effective clinical management” for
chronic fatigue syndrome and she warned that GPs’ perceptions “may be a
barrier to mental health approaches”.

The Medical Adviser to the ME Association, Dr Charles Shepherd, was one of
the hundred or so respondents in the e-BMJ Rapid Responses: “As a doctor who
likes to receive balanced information in the BMJ, I was concerned at what
appears to be a clear bias by the authors in favour of the psychosomatic
explanation for ME/CFS”
(http://www.bmj. com/cgi/eletters /328/7452/ 1354#61348 ).

Also in 2004, Raine published “An experimental study of determinants of
group judgments in clinical guideline development”, Lancet 2004:364:429- 437.
It was funded by the MRC, so perhaps unsurprisingly, “cognitive behavioural
therapy, behavioural therapy, psychodynamic interpersonal therapy, and
antidepressants for irritable bowel syndrome and chronic fatigue syndrome
were selected for study”.

Raine explains in this article that CBT “is provided by CBT therapists who
aim to modify thoughts and beliefs with the expectation that emotional and
behavioural changes will follow” and that behavioural therapies focus on
“the modification of behaviour to positively reinforce healthy behaviours”
which “emphasise the role that social factors can play in the development
and maintenance of functional somatic complaints. The goal is to identify
and reinforce ‘well’ behaviours while reducing reinforcement for somatic
behaviours eg. excessive diagnostic testing or restricting mobility”.

Although not technically a member of the GDG, Professor Raine was in charge
of the voting system used by the GDG and must have wielded considerable
influence on the outcome. That the “consensus” method used was in reality
little more than a voting system has been confirmed by GDG member Dr Fred
Nye (J Inf 2007: 55:6:569-571) .

Another curious failure on the part of NICE was the outright refusal of the
GDG to accept the WHO international classification of ME/CFS as a
neurological disorder as listed in the ICD-10 at G93.3. This makes it all
the more notable that in November 2007 the Customer Service Centre at the
Department of Health sent out correspondence which stated: “The Government
has long recognised the World Health Organisation (WHO) classification of
CFS/ME as a neurological disease, and this is the definition used in the
final clinical practice guidelines published by NICE on 22nd August”. That
was an outright lie. It is a lie that is being perpetuated, because on 25th
November 2008, the Northern Ireland Minister for Health, Social Services and
Public Safety, Michael McGimpsey MLA, confidently stated: “There have been a
number of studies and reports in recent years clarifying that (ME) is a very
real and debilitating neurological condition. Most recently this has been
established in a NICE clinical guideline on the diagnosis and management of
ME and CFS issued in August 2007” (ref: COR/1471/2008) . The NICE Guideline
specifically and perversely refused to accept “CFS/ME” as a neurological
condition, so it is unacceptable that NICE’s own paymasters (the DoH) should
be advising constituents otherwise.

Failure of NICE to adhere to the Guideline Development Manual in the
selection of GDG members

Perhaps the most rampant failure of procedure (and evidence of bias) is to
be found in NICE’s disregard of the Manual’s directions about the required
composition of the GDG. Bias may have been inevitable from the outset,
because two people who were involved in the selection of the GDG members
were Professor Anthony Pinching and Patricia Noons, who “advised” the GDG
chairman Professor Richard Baker (who was himself chosen by Nancy Turnbull,
Chief Executive of the National Collaborating Centre for Primary Care).
Pinching was chairman of the CFS/ME Service Implementation Steering Group
and Pat Noons was Programme Director of the CFS/ME Service Investment; both
therefore had a clear interest in ensuring that CBT/GET was to be
recommended by the NICE GDG. Pinching’s views are well-known: “The clinical
features are fatigue not related to on-going exertion. Over-investigation
can be harmful and counterproductive to the management of these patients,
causing them to seek abnormal test results to validate their illness. The
benefits of graded exercise have been shown by randomised controlled trials
(citing four Wessely School studies). A behavioural response is crucial.
The essence of treatment is activity management and graded rehabilitation” .
(Anthony J Pinching. Prescribers’ Journal 2000:40:2: 99-106). Patricia
Noons has a reputation of being unhelpful to ME/CFS patients, for example,
internet notice boards contain the following: “Patricia Noons came to one of
our steering group meetings and she was less than helpful. All she was
interested in was -- just get these clinics set up as soon as possible…it
doesn’t matter what the patients think”; “Even if the Clinical Champion (CC)
wanted to be different, it was almost impossible for them to be so, as the
Department of Health and the CNCC (Clinical Network Co-ordinating Centres)
set the agenda. I have seen with my own eyes the pressure that was placed
to conform to the ‘rules’ by the ex-coordinator from the Department of
Health (Pat Noons)”. Even more tellingly, in 2004 Patricia Noons was
involved with Trent Report, which was unambiguous: “CFS/ME was not a disease
as such”. She was also involved with the 2006 NHSPlus Guideline
“Occupational Aspects of the Management of CFS: A National Guideline” which
has been rejected by 25 ME charities as unfit for purpose. That Guideline
was developed in consultation with stakeholders, DWP, NICE and Pat Noons at
the Department of Health, as documented in the official Minutes of the All
Party Parliamentary Group on ME held on 17th May 2007 at the House of
Commons.

Possibly because of the intention that CBT/GET was to be the primary
management regime to be recommended by the NICE Guideline, not a single
disease-specific expert who does not subscribe to the Wessely School
behavioural model of “CFS/ME” was permitted to be a GDG member (their
written applications were rejected by NICE in writing).

This was in direct contradiction to NICE’s own Guideline Development Manual,
which stipulates the need for a balanced membership of a GDG.

NICE disingenuously claims that the GDG was representative of the wide body
of professionals who deal with “CFS/ME” on a day-to-day basis, but that
statement is to be challenged in the High Court.

Consideration of the known views of members of the Guideline Development
Group (GDG)

The GDG chairman, Professor Richard Baker, a general practitioner for two
days a week, had no prior knowledge or experience of “CFS/ME” whatever.
Although he failed to declare it, he is described as “a pioneering thinker
in Primary Care Mental Health”. In his evidence to the Gibson Inquiry on
10th May 2006, Baker pointed to the MRC PACE trial as a good example of work
being undertaken in the UK, to which Dr Ian Gibson MP responded by pointing
to the criticism that has been voiced about the MRC trial and its underlying
research, which some have accused of being biased towards a psychiatric
model of “CFS/ME”. Baker’s response was telling: he reaffirmed that, after
talking to the MRC trial researchers (ie. the Wessely School), he did not
believe this to be the case.

Jessica Bavinton (physiotherapist) previously worked with psychiatrist
Professor Peter White at St Bartholomew’s Fatigue Clinic; she is involved in
the MRC PACE trial (reporting to the trial’s Principal Investigator,
Professor White) and is a treatment leader, having written the GET manual
for that trial; with Peter White, she is involved in the medical insurance
industry (for example, with Scottish Provident and Swiss Re, of which Peter
White is Chief Medical Officer) to carry out “assessments” on “CFS/ME”
claimants, for whom she carries out “lots” of such assessments. Letters
dated 7th August 2007 from Scottish Provident (i.e. before publication of
the Guideline) are unequivocal: one is addressed to Jessica Bavinton at
Conan Doyle Consulting Rooms, 2 Upper Wimple Street, London W1G 6LD and
says: “Dear Jessica, I would appreciate it if you would visit Mrs W at home.
We are looking for your assessment of (her) inability to perform any
occupation together with any other observations / thoughts that you may
have”. Another letter to the client says: “We are arranging for a claims
visit. This will be done by Jessica Bavinton who specialises in performing
home visits of this nature”. On 13th August 2007 the client spoke to Miss
Bavinton on the telephone and made a transcript of what Miss Bavinton said:
“She told me she specialises in ME; she does ‘lots’ of these assessments for
insurance companies; she refused to tell me what ‘treatments’ she advocates
for ME patients; the insurance company may well fund (Miss Bavinton’s)
treatments”.

Miss Bavinton is not only a physiotherapist, she has been working for a
Diploma in Human Givens therapy with the Human Givens Institute, aiming to
work privately in this field. Human Givens therapy has been described by a
medical practitioner as “dodgy psychobabble” . It purports to deal with
“mental distress” in people who are depressed, anxious, phobic, or who have
problems with addiction. In 2004, Miss Bavinton published an article called
“The mended fin” (Human Givens Publishing, 2004: volume 11, no.1) which
claims to show how the human givens approach empowers patients by promoting
emotional health and clear thinking. In a TimeBank article published in
2002 (for which the web page is no longer available), Miss Bavinton said: “I
get a greater understanding of people and their responses to life, deepening
my understanding of myself, but one of the most special feelings is knowing
I directly contribute towards the number of people smiling in my community
and that makes me smile”.

Miss Bavinton is also in private practice working for Positive Health
Strategies Ltd at King Edward VII Hospital, Midhurst, West Sussex. The
Director of Positive Health Strategies is Dr Brian Marien, a psychologist
and CBT therapist who for ten years worked with Peter White at the Chronic
Fatigue Clinic at St Bartholomew’s Hospital, London and who is now the
Clinical Lead for the Sussex NHS “CFS” service. The company information
describes her as “currently leading on a project involving the dissemination
of good practice to therapists nationwide. Jessica is a Human Givens
Therapist, which enables her to take a fully integrated approach
incorporating management of emotional health”

(http://web.archive. org/web/20060118 223755/www. phsmedical. co.uk/theteam. html
).

Miss Bavinton also facilitates fee-paying instruction classes on GET for
health professionals on “How to introduce GET for patients with ME/CFS as
recommended in the NICE Guideline”, one of which took place at Frenchay
Hospital Bristol, on 12th September 2008. This was the first phase of Graded
Exercise Therapy Training. An advanced course is scheduled for December
2008. This training event was also held in Manchester in July 2008.

It is notable that Miss Bavinton was deemed by the GDG selectors to have
more clinical expertise in “CFS/ME” than NHS consultants with a professional
lifetime’s experience of ME/CFS, such as infectious diseases expert Dr
William Weir, neurologist Dr Abhijit Chaudhuri (jointly nominated by
consultant neurologist Professor Leslie Findley and the Medical Adviser to
the ME Association, Dr Charles Shepherd), paediatrician Dr Nigel Speight,
consultant clinician Dr Jonathan Kerr, Professor Julia Newton and Dr Charles
Shepherd. It is also notable that no representative of either the ME
Association or the 25% ME Group for the Severely Affected was permitted to
be a member of the GDG, and that their written applications were perversely
rejected by NICE. This refusal by NICE to permit any representative from the
ME Association, or from the 25%ME Group for the Severely Affected should be
compared with NICE’s Guideline on multiple sclerosis (CG8), where the GDG
was replete with MS charities’ representatives.

Consultant paediatrician Dr Esther Crawley is a leading supporter of CBT/GET
and is dismissive of the regular and consistent patient reports which
identify adverse effects; she is now Medical Adviser to AYME (Association of
Young People with ME), which has adopted the psycho-social model and
actively promotes CBT/GET. As that charity’s founder, Jill Moss, was a GDG
“expert co-optee”, this effectively gave that charity two bites at the same
cherry, whilst denying any representation from the other children’s charity
TYMES Trust (The Young ME Sufferers’ Trust) which does not support the
behavioural model of “CFS/ME”.

It is a matter of record that AYME (and its sibling adult charity Action for
ME) have been the recipients of a Section 64 grant, which would require the
charities’ promotion of CBT/GET for “CFS/ME” and would preclude their openly
supporting a Judicial Review of the NICE Guideline on “CFS/ME”. A S64 grant
is the way in which the Secretary of State for Health, through Section 64 of
the Health Services and Public Health Act 1968, has the power to make grants
to voluntary organisations in England whose activities support the
Department of Health’s policy priorities (in this case, CBT/GET for
“CFS/ME”).

Dr Tony Downes is described simply as a “GP”, but this is misleading,
because his special interest is in Primary Care Mental Health Services. He
sits on the Executive Committee of the Mental Health Research Network,
Wales, alongside Professor Richard Bentall, Professor of Clinical Psychiatry
at Bangor University. (Professor Bentall and his co-author, GDG member Dr
Fred Nye, contributed two of the 18 trials that constituted the NICE
“evidence-base” ). In 2006, the Royal College of General Practitioners’
Mental Health Task Group issued a curriculum statement (No.13) designating
CFS as a mental health disorder that was suitable for treatment in Primary
Care. (For the record, one of the authors of the RCGP’s curriculum statement
No.13 was Wessely’s wife, Dr Clare Garada, who was a Senior Policy Adviser
to the Department of Health). In addition to his involvement with WaMH (the
Wales Mental Health Group in Primary Care), Dr Downes is involved with the
Centre for Mental Health, whose Manifesto “Speaking our Minds” contains the
following: "The Centre will place high emphasis on mental health" and it
quotes Dr Tony Downes at the beginning: "A well mind is a healthy person and
a healthy people is a well nation. Mental wealth (sic) is key to a nation's
economic health and a 'feel good' culture is vital to successful government.
Government policy should promote mental wealth (sic) creation and
distribution. Government and the people should work as co-producers of
mental health and share in the resulting mental wealth". The Manifesto
quotes Wessely almost verbatim: "Up to 50% of hospital outpatients have
symptoms unexplained by modern medicine (medically unexplained symptoms,
somatisation) . The health and social costs resulting from wasted time
through the acquisition of an unhelpful label and the inappropriate
investigations and referrals for functional disorders and syndromes (ie.
mental disorders) are considerable" . (Wessely and the medical insurance
industry refer elsewhere to ME as an unhelpful label, as it implies real,
organic disease, so dropping the label ME was helpful for the insurance
industry, and the Royal College of General Practitioners’ [Wales] submission
to NICE was unambiguous: “Please use the term CFS and stop perpetuating
ME”). On page 5 the Manifesto talks about "respect for the roles of social,
economic (and) occupational problems in determining and shaping
psychological disability”.

It can thus be seen that for Dr Tony Downes to be described by NICE as
simply an innocuous “GP” was disingenuous, to say the least.

Consultant neurologist Dr Richard Grunewald has a special interest in the
interface between neurology and psychiatry, especially “functional”
neurological symptoms. He is associate editor of “Behavioural Neurology”,
whose editors regard “behavioural neuroscience” as “exciting and expanding
fields of research”. In 2005, he published a paper in the
JNNP:2005:76: 307-314 on “predisposing, precipitating and perpetuating
factors” (a Wessely School phrase that permeates the NICE Guideline) and he
stressed the need for the involvement of liaison psychiatrists (Wessely is a
liaison psychiatrist) . Grunewald emphasised that the term “functional” is
more acceptable to patients than the terms “psychosomatic” and “medically
unexplained”. He also emphasised that “functional symptoms can be classified
as manifestations of somatoform disorders” and noted that “functional
symptoms were previously called ‘hysterical’ ”. He went on to talk about
“feigning illness or exaggerating symptoms”.

On 14th October 2006 at a Sheffield ME Group Conference organised by Mrs Ute
Elliott, Chair of the Sheffield ME Group (who was one of the three patients
on the GDG), Dr Grunewald spoke about ME. Amongst other things, he said:
“There is widespread ignorance about ME and the literature doesn’t help”.
That is an insupportable assertion, because there are over 4,000/5,000
peer-reviewed papers on ME/CFS. Grunewald continued: “When the NICE
Guidelines are published I hope this will be the beginning of a sea change.
ME is always the result of stress. The way that has been found most
effective is to address this with a multi-disciplinary approach including
graded activity programmes and addressing psychological issues. Some models
(of ME/CFS) are unhelpful such as the virus model. There doesn’t seem to be
any doubt that for the majority of people there is not a viral trigger”.
Again, this is an insupportable statement, because there is an extensive
international literature about viral involvement in ME/CFS, especially
enteroviruses. Grunewald continued: “The symptoms of ME are so physical but
I’m afraid (the questioner) will not find a physical cause. I find the
development of the NICE guidelines exciting because they represent a change
that’s coming in the NHS approach”.

In 2007, Grunewald published a paper in the journal Psychotherapy: Theory,
Research, Practice, Training (“Engagement in psychological treatment for
functional neurological symptoms – barriers and solutions”,
2007:44:3:354- 360) in which he reiterated his views about “predisposing,
precipitating and perpetuating factors” for “functional neurological
symptoms”, saying such symptoms are “costly to health services and the
economy” but that “patients with functional neurological symptoms are often
hostile to the idea of psychological treatment for symptoms, which they
typically attribute to an undiscovered physical cause” (quoting Wessely
School psychiatrist Michael Sharpe) and that “it has long been recognised
that patients with a long history of chronic symptoms and entrenched support
systems reinforcing illness behaviour can be particularly difficult to
engage” because such patients “were concerned that compliance would prevent
further medical investigations which they felt were necessary”. Grunewald’s
solution was that these patients should receive psychotherapy (as the NICE
Guideline CG53 recommends).

Also in 2007, Grunewald published another paper extolling the virtues of
psychotherapy for people with somatoform disorders, especially for
“non-neurological functional symptoms” (in which he specifically includes
CFS), in which he concluded: “”Psychotherapy may be a cost-effective
intervention for patients presenting with functional neurological symptoms”
(J Psychosom Res 2007:63:625- 632). Citing his own (2005) work, Grunewald
asserted: “It is likely that some functional neurological symptoms are
factitious or malingered”; citing Michael Sharpe (2004), he asserted:
“Patients with functional symptoms are much more likely than patients with
‘neurologically explained’ disorders to attribute their problems to purely
physical causes rather than to emotional or social difficulties” ; citing
Simon Wessely (2002), he asserted: “Functional symptoms are costly to the
health service and to the economy”.

Grunewald’s view about the estimated cost-effectiveness of his favoured
psychotherapy would have endeared him to NICE: “the described therapy is
inexpensive, especially because cost savings from withdrawal of
inappropriate medical treatment were not factored into the estimation of
cost-effectiveness” .

Dr William Hamilton is listed as a GP and researcher. However, he is a
long-standing collaborator with Professor Peter White (Family Practice
2005:22:383- 388; JRSM 2004:97:571- 575) and is a leading proponent of CBT/GET
for “CFS/ME”, which he regards as psychogenic. He is Chief Medical Officer
of two medical insurance companies (Exeter Friendly Society and Liverpool
Victoria, which took over Permanent Health); LV in particular actively
discriminates against “CFS/ME” patients. As such, he was unfit to sit on
the GDG: the Guideline Development Manual requires that anyone with vested
and conflicting interests must declare those interests before being
appointed to a GDG, so it is anticipated that the Judge will enquire whether
Dr Hamilton failed to declare such interests, or whether he did so, but the
chairman (Professor Richard Baker) failed in his duty by permitting Hamilton
to sit on the GDG.

Hamilton’s views about CFS are unequivocal: “The higher number of GP
consultations in patients who develop CFS can be explained by perceiving
symptoms more readily as illness. Cognitive behavioural therapy, which
addresses beliefs about symptoms and illness, in particular those that can
block recovery, is the only treatment shown to be helpful. We consider that
more emphasis should be given to this area, both for funding treatment and
for research on CFS” (British Journal of General Practice 2001:51
(468):553-558) .

Hamilton’s conclusions were attacked by Professor JC Murdoch in the BJGP, to
which Hamilton took exception. He replied by asserting: “No abnormality has
been demonstrated with CFS. Extensive searches for immunological,
infectious or endocrine explanations have drawn a blank”, an astonishing
assertion that is readily disproved by a survey of the scientific and
medical literature. More troubling is Hamilton’s interpretation of his own
study and his demand that CFS researchers and clinicians examine their
beliefs against his findings and see how well they match (Co-Cure RES. NOT:
21st December 2001).

In an earlier paper, Hamilton stated that his information came from an
insurance company records. Contrary to the international evidence, his own
study found no specific viral or immunological explanation for CFS and he
concluded: “abnormal illness behaviour is of greater importance than
previously recognised” (JRCP Lond 1998:32:44-48) .

It seems to be the case that Dr Hamilton was head-hunted to be a member of
the GDG under the chairmanship of Professor Baker specifically because of
his published views on CFS/ME. This is clear from the R&D (Research and
Development) annual reports by NHS organisations in England for 2006:

“Dr Hamilton’s CFS/ME work has generated publications that have been widely
read and his work generated the invitation to join the NICE guideline
development group for the treatment of CFS/ME which is due to report in
2007” (http://www.nrr. nhs.uk/2006Annua lReports/ Section2A- 2E.asp?O= 582 ).

Community Dietician Judith Harding was a member of the CNCC Collaborative
2004 – 2006, CFS/ME Service Investment Programme 2004 –2006, “Enabling
People”: Implementation of Clinical Service Developments for
Multi-Disciplinary Chronic Disease Management, Penninsula Medical School,
CFS/ME Programme (Clinical Lead: Professor Anthony Pinching; Programme
Director: Patricia A Noons).

Dr Fred Nye, Clinical Champion of the Liverpool “CFS” Clinical Network
Co-ordinating Centre, achieved notoriety in 2005 when an advertisement for
“therapists” to work in his Centre caused justified offence. The
advertisement informed applicants patients with “CFS/ME” have perpetuating
illness behaviour; that they experience barriers to understanding; that
there can be significant barriers to accepting the changes needed in
behaviour, which have to be overcome in therapy in order to facilitate a
successful outcome; that the Fatigue Therapist will be required to modify
patients’ predisposing personality style and provide motivation to patients
with CFS; that some clients may be resistant to working in a psychological
framework and that there may be verbal aggression (Chronic Fatigue Treatment
Service: Ref: 2570. Closing date: 31st January 2005).

In 2001, Nye published his view in the BMJ (2001:322:387- 390) that “CFS”
patients “develop a strong physical perception of the condition” and that
“Extensive research has failed to identify any serious underlying
pathology”. Such a statement is easily shown to be erroneous. Nye
continued: “Reduction in activity results in cardiovascular and muscular
deconditioning, which exacerbates symptoms. We have developed a treatment
for CFS (that) involves educating patients about the medical evidence of
physical deconditioning” . The article re-iterated the take-home message:
“No serious underlying pathology has been identified in patients with CFS.
Cognitive behaviour therapy targeted at changing illness beliefs and graded
exercise helps some patients”. However, Nye was compelled to concede that an
intention to treat analysis showed that 32% of patients still complained of
fatigue one year later.

In a follow-up study published in the British Journal of Psychiatry in
2004:184:142- 146, Nye had not changed his beliefs about CFS/ME. Despite his
own acknowledgement in 2001 that 32% of patients in the trial still
complained of fatigue at one year, the 2004 study stated that at one year,
“treated patients showed significantly greater improvement in measures of
fatigue”. He was obliged to record that “One patient who had received
treatment died by suicide in the follow-up period (but) it seems unlikely
that this was an adverse reaction to the treatment”. Nye also had to record
that patients who withdrew from treatment were not followed up.
Nevertheless, his take-home message was: “Providing patients with
physiological explanations of symptoms of chronic fatigue syndrome to
encourage graded exercise produces long-term benefits in outcome”.

Both papers used the Oxford criteria, so no conclusions can be drawn about
the efficacy of Nye’s interventions for people with ICD-10 ME/CFS.

Of relevance is the fact that Nye failed to make a full disclosure of
competing interests to the extent that the independence of the GDG’s
decision-making process was called into question: two of his research
projects were cited in the York Systematic Review and were approved of by
himself as a member of the GDG, so in effect Nye was supporting and voting
for his own work. Not declared either was the fact that two of Nye’s
co-authors are currently in receipt of a £824,129 MRC grant for “CFS/ME”
research.

It is clear from his letter in the Journal of Infection (2007:55:6:569- 571)
that Nye is actively hostile to patient opinion, and there are disturbing
reports of abrasive treatment of patients attending his CFS/ME clinic. For
someone who is a committed Anglican lay preacher (at St Faith’s, Great
Crosby, Liverpool, where his wife, Mrs Linda Nye, is the parish Child
Protection Officer), this is especially disquieting.

Ms Amanda O’Donovan is a clinical psychologist at St Bartholomew’s Hospital.
In March 2005 she was appointed CNCC co-ordinator for the CFS/ME Centre
based at Barts, headed by Professor Peter White; as Lead Clinical
Psychologist, she is heavily involved with the psychosocial model of
“CFS/ME” and she promotes the use of CBT/GET for “CFS/ME”. She has attempted
to justify its use by insisting that CBT is used in other “physical”
conditions such as stroke, diabetes, chronic pain and cancer

(http://health. groups.yahoo. com/group/ IMEGA-e/message/ 24450 ). However,
Cancer Research UK has confirmed in writing that they are unable to accept
that this is the case. In the other conditions mentioned by Ms O’Donovan,
CBT is used as adjunctive support, not as the primary (and only) management
intervention as is the case in ME/CFS.

Dr Alastair Santhouse is a Consultant Liaison Psychiatrist who works with
Simon Wessely (the foremost proponent of the psycho-social model of
“CFS/ME”) at the Chronic Fatigue (sic) Research and Treatment Unit, Kings
College Hospital, London. His Head of Service is Professor Trudie Chalder.
Santhouse failed to declare that his employer (Trudie Chalder) is in receipt
of part of a £2 million MRC grant for the PACE trial that is investigating
CBT/GET for “CFS/ME”, nor did he declare that his employer’s research papers
constituted 11% of the NICE “evidence-base” in alleged support of CBT/GET.
His employer would thus be a prime beneficiary of a NICE recommendation of
CBT/GET for “CFS/ME”. In 2004, Santhouse published “The 10 chronic fatigue
syndrome commandments” (Doctor, 26th February 2004) in which he stated: “CFS
is the accepted name among professionals but many patients still prefer the
name ME. Attribution of illness to a purely physical cause appears to
predict a poorer response to treatment. The best research evidence is for
CBT and/or a graded exercise programme”. In 2005, Wessely wrote a Foreword
for Santhouse (“Fatigue as a Window to the Brain”; Psychological Medicine
2005:337:a2331) . It is noted that Santhouse sponsored Simon Wessely’s cycle
ride to Paris in 2007. It may also be noted that Santhouse is on record as
asserting: “Psychiatry is the noblest branch of medicine” and that he states
of himself: “At times I am carried away by the nobility of my calling” (BMJ
2008:337:a2331) .

Dr Julia Smedley is an Occupational Health Physician whose main interest is
in occupational risks to healthcare workers. Her publications include “A
survey of the delivery and uptake of influenza vaccine among healthcare
workers” (Occup Med 2002:52:271- 276); “Respiratory illness in agricultural
workers” (Occup Med 2002:52:451- 459); “Effectiveness of an influenza vaccine
programme for care home staff to prevent death, morbidity and health service
use among residents” (BMJ 2006:333:1241) and “Influenza immunisation:
attitudes and beliefs of UK healthcare workers” (Occup Environ Med
2007:64:223- 227). Wessely School psychiatrist Professor Michael Sharpe is
very active in the world of Occupational Health and Insurance Medicine and
his views permeate the world of Occupational Medicine (i.e. that ME is a
“pseudo-disease” that can be “cured” by CBT and that ME sufferers who
“refuse to accept the stigma of mental illness remain the undeserving sick
of our society and health service”).

As the Guideline Development Manual stipulates that GDG members must be
disease-specific experts, it will be interesting to hear NICE’s explanation
to the Judge as to why Dr Smedley was deemed to have more clinical expertise
in the disorder in question than, for example, Dr William Weir, Dr Jonathan
Kerr, Dr Abhijit Chauduri, Professor Julia Newton or Dr Charles Shepherd.

However, Dr Smedley was involved with the production of the Department of
Health’s NHSPlus Report “Occupational Aspects of the Management of Chronic
Fatigue Syndrome: A National Guideline” published in October 2006, whose
Guideline Development Group included Professor Trudie Chalder and whose
“external assessors” were psychiatrists Professor Michael Sharpe and
Professor Peter White. This National Guideline was based on the behavioural
model of “CFS/ME” and made exaggerated claims for the effectiveness of
CBT/GET in returning people with “CFS/ME” to employment. This exaggerated
claim was based on six studies, three of which were co-authored by Trudie
Chalder and one was co-authored by Peter White. The National Guideline was
severely criticised to the extent that 25 UK ME/CFS organisations signed a
joint Statement condemning it as unfit for purpose. Its conclusions were
comprehensively discredited by an authoritative American systematic review,
which concluded: “No specific interventions have been proved to be effective
in restoring the ability to work” (SD Ross et al. Arch Intern Med
2004:164).

Dr David Vickers, Clinical Lead, children and young people with CFS/ME
service, was the second paediatrician on the GDG (the other being Dr Esther
Crawley). It is notable that both Drs Crawley and Vickers are known
supporters of the psycho-social model of “CFS/ME” and that the UK’s senior
paediatrician whose 25 years’ experience afforded him unique expertise in
paediatric ME/CFS and who was a member of the 1994 UK Task Force on ME/CFS
but who does not support the psycho-social model (Dr Nigel Speight) was not
permitted to be on the GDG. Dr Vickers holds the post of Registrar to the
Royal College of Paediatrics and Child Health (RCPCH). In his Application
Manifesto for the post of Registrar, Vickers wrote: “The most important role
is supporting the President and other Senior Officers”. The views of the
RCPCH bear little relationship to children and young people with ME/CFS. The
College’s view of ME/CFS is that it is a behavioural disorder. The RCPCH
report, in the production of which Dr Vickers was a Delphi participant
(“Evidence-based Guidelines for the Management of CFS/ME in Children and
Young People”, published in December 2004) emphasised behavioural
interventions: “Children and young people with CFS/ME should be considered
for graded exercise or activity programmes” and contributors referred to the
“emotional dimensions of the illness” and stated: “The overarching aim of
CBT is to help patients modify their behaviour for their own benefit”.

Gillian Walsh is a nurse who is the Network Co-ordinator for the Manchester
“CFS” Centre. She, as is Miss Bavinton, is involved with Human Givens
Therapy and whilst she was on the GDG was working towards a diploma from the
Human Givens Institute. She has a private Human Givens practice in
Manchester, which is described as her “helping career”. She uses the letters
“ M.FETT” after her name, which stand for the “Fellowship of Eclectic
Talking Therapists”. This is explained as being a “professional body for
ethical counsellors and hynotherapists who use techniques as best suits the
client”. She is referred to as “an experienced counsellor and
psychotherapist” and helps patients to reach their goals and aspirations.
She is also a reflexologist (with a Diploma from the Centre for Advanced
Reflexology) and a hypnotherapist. Her employer at the Manchester CNCC is
liaison psychiatrist Dr Damien Longson, chairman (replacing Professor
Anthony Pinching) of the CFS/ME Clinical Network Co-ordinating Centres
Collaborative. He is also the Lead for audit of these Centres, in
collaboration with GDG members Dr Esther Crawley and Dr Fred Nye, together
with Professor Peter White.

Carol Wilson is Lead Occupational Therapist for the Cornwall CFS/ME Service
and is CFS/ME Network Co-ordinator for South West Peninsula. The Lead
consultant of the Cornwall CFS/ME Service is Professor Anthony Pinching.

Dr Philip Wood has been a consultant immunologist at Leeds since January
2002. He failed to declare that he was a member (2004-2006) of the CFS/ME
Service Investment Programme (whose Clinical Lead was Professor Anthony
Pinching and whose Programme Director was Patrician Noons). He also failed
to declare that he was a member (2004 – 2006) of the CNCC Collaborative.
His main interest is in adult and paediatric allergy, but he has an interest
in “chronic fatigue” (note: this is not the same as ME/CFS). He has
published one study on allergic disease in children (Eur J Pediatr
2005:164:741- 747). He is a clinician in the Leeds & West Yorkshire CFS/ME
Service, whose 2008 booklet “Goal Setting” says the following: “CFS/ME is a
diagnosis that does not fit under one specific medical speciality. Complex
referrals may be seen initially by a physician and liaison psychiatrist.
Unfavourable prognosis is associated with prolonged duration of symptoms
(and) untreated beliefs around the need for purely physical treatment. The
Leeds & West Yorkshire CFS/ME Service finds that if the practitioner can
demonstrate why a diagnosis has been made, then that patient will start to
engage in taking some responsibility in managing the effects of CFS/ME. The
Leeds & West Yorkshire CFS/ME Service has three components: 1) Medical
assessment by Dr Philip Wood; 2) Biopsychosocial assessment and
considerations of interventions in liaison psychiatry led by Dr Hiroko Akagi
and 3) Therapy Services, led by Sue Pemberton, occupational therapist. We
all need goals to move forward in our lives. Without specific goals we can
feel demotivated. This can have an impact on how we feel about ourselves.
Setting and working towards a goal releases energy. How do you feel when
you have no goals? The therapist within the team will help you with goal
setting”. The “Useful Books” list contains only books by Wessely School
members (Trudie Chalder’s “Coping with Chronic Fatigue”, which has nothing
to do with ME/CFS; “Overcoming Chronic Fatigue” by Trudie Chalder & Mary
Burgess; and a book by psychiatrist Michael Sharpe, co-authored by Frankie
Campling, a Wessely School supporter). Bearing in mind that many ME/CFS
sufferers are professional people, such a superficial approach is an affront
to their intelligence and cannot help people deal with vertigo,
cardiomyopathy, pancreatitis, dysautonomia, adrenal insufficiency or
vasculitis, all of which are well-documented key features of ME/CFS.

None of these GDG “experts” had anything to offer people with ME/CFS, but
everything to offer the pre-determined agenda of the NICE Guideline CG53 to
recommend CBT/GET across the nation. None of them is a “disease-specific”
expert as required in the Manual, but no expert dissenting voices were
permitted to be GDG members. The result is the recommendation of
inappropriate behaviour-modifying interventions for people with a serious
multi-system disorder who are unable to benefit from the recommended
interventions.

It is the case that the Wessely School were unsuccessful in obtaining their
intended outcome (i.e. that ME does not exist as a nosological disorder and
that CFS – onto which they patronisingly tagged ME to read CFS/ME – is a
somatoform disorder) in both the 1994 National Task Force Report and also in
the 2002 Chief Medical Officer’s Working Group Report on CFS. Indeed, it is
reported that Peter White was jubilant when he believed he had been
successful in covertly removing from the latter Report the provision for
children to receive home tuition (after it had been agreed), and that he
argued against the need for the final meeting before the Report’s
publication. However, it is reported that the chair (Professor Allen
Hutchinson) was persuaded to permit the final meeting (which Peter White
believed had been cancelled), at which the provision for home tuition that
Peter White had removed was re-instated. It is a matter of record that five
Wessely School members were so incensed that they did not get their own way
that they “walked out” and refused to sign up to the final Report. Those
five members were psychiatrists Professor Peter White; Professor Elena
Garralda and Dr Anthony Cleare; Trudie Chalder (fatigue therapist), and Dr
Alison Round (a community physician and co-author with GDG member Dr William
Hamilton).

It seems irrefutable that, having been thwarted twice in the past, in the
production of the NICE Guideline on “CFS/ME”, the Wessely School were
ruthlessly determined to be successful to the extent that every single
professional member of the GDG was carefully selected and could be relied
upon to support the somatoform model of “CFS/ME” and the recommendation of
CBG/GET.

NICE’s explanation for this unequivocal bias is eagerly awaited. That NICE
deliberately and intentionally excluded every single ME expert in the UK
from membership of the Guideline Development Group is a scandal that will
hopefully be exposed under the spotlight of a High Court Judicial Review.

There were many other failures of the GDG to adhere to the Manual which the
Judge may choose to address at the High Court Hearing, not least the GDG’s
failure to identify and define the disorder to which the Guideline purports
to relate.

Conclusion

No-one could have summed up the situation better than Hayley Klinger in a
letter to The Times Online on 11th December 2008: “Despite thousands of
medical research papers showing immunological, neurological, endocrine,
cardiac and gene expression involvement in ME, it is thought of as an
illness of fatigue and even called chronic fatigue syndrome by the media and
some doctors”.

And as Hilary Patten so aptly wrote in a letter to The Sun on 12th December
2008: “American research has proved ME is caused by a viral and bacterial
infection. But over here, health guidelines drawn up by psychiatrists, only
allow psychological interventions for sufferers. It is an absolute scandal”

Campaigning for Research into Myalgic Encephalomyelitis (RiME)

(RiME)

Permission to Repost

Campaigning for Research into Myalgic Encephalomyelitis (RiME)

Services Inquiry - May Day

The overwhelming feedback RiME gets re. 'CFS/ME' services in England is
negative, with many saying that effective treatment (that is treatment that
would lead to recovery or substantial improvement) will only come through
biomedical research.

Worryingly, the Inquiry will be led by Des Turner MP APPG Chair in cahoots
with the APPG's Secretariat - AfME and the MEA. Each of these parties
appears biased toward the clinics; that is, they present too rosy a picture.
There are concerns, therefore, that somehow they might manufacture a
favourable report. If they did, then the outcome would surely weaken the
case for publicly funded biomedical research. Ministers and MPs could merely
reply to letters on the latter saying that ME patients (or a healthy
percentage) are already being successfully treated...

Is this where the whole thing is heading? And where it was always meant to
end?

What can you do?

1. If it's possible get to the next APPG Meeting and voice your concerns (if
you can't, have you a relative or friend who could?). Also, raise the issue
of biomedical research: what the APPG is or rather not doing about it.

2. Generally get more involved in terms of challenging the status quo:
writing letters (please send us copies); posting on the internet....

3. If you have concerns re. the services in your area, send them to us. We
are particularly interested, currently, in hearing form people in Yorkshire
+ Sussex. RiME intends over the winter to add to the information in the
letters and clinics folders on its website.

If more people don't speak up now and more forcibly, it will continue to be
'same old, same old... ' as far as ME patients are concerned.

Paul Davis rimexx@tiscali. co.uk

The judicial review that is the topic of the 'unofficial'

the judicial review that is the topic of
the 'unofficial'

> website: http://www.nicemeco urt.co.uk/

Do you think the NICE guideline is fit for purpose? Or does it need to be rewritten?

MAY BE REPOSTED


The ME Association's on-line survey for December concerns the NICE guideline
on ME/CFS.

Do you think the NICE guideline is fit for purpose? Or does it need to be
rewritten?

Vote on-line at: http://www.meassociation.org.uk

What are the symptons???

Chronic Fatigue syndrome / Myalgic Encephalomyelitis

http://www.cafamily .org.uk/medicali nformation/ conditions/ azlistings/ c32_2.html

'Why patients with severe M.E. are housebound and bedbound' by Jodi Bassett, 2008

*please repost* *please repost* *please repost* *please repost* *please
repost*

'Why patients with severe M.E. are housebound and bedbound' by Jodi Bassett,
2008

http://www.ahumming birdsguide. com/houseboundan dbedbound. htm

The UK Daily Mail today devoted an entire page to 11 letters about the Lightning Process.

MAY BE REPOSTED

The UK Daily Mail today devoted an entire page to 11 letters about the Lightning Process.

Daily Mail letters: http://www.meassoci ation.org. uk/content/ view/705/ 70/

Money raised at Fundraiser

The total of money raised in the felons on Friday night was £1200.00

Lobby ur MP and MLA

sign into visit my society.org and lobby your MP or MLA at the lack of services in Belfast for ME sufferers. Strength in numbers !!""

Lord Mayor of Belfast speaks at Charity Fundraiser in Aid of ME

Belfast's Lord Mayor, Tom Hartley supports parents in raising awareness and funding into ME Research. Mr Hartley give a rousing speech in the Felons Club in Belfast on Friday 17th October 2008 which can be heard by clicking on the link below. He pledged his support to the Christie family and promised to help in any way he could.






http://www.bebo.com/FlashBox.jsp?FlashBoxId=7992620099&

Picture: Paul Christie, Tom Hartley (Lord Mayor), Antoinette Christie

Article in Andersonstown News - 16 August 2008

Here we are again, our third annual fundraiser in aid of ME Research.
To date in Belfast we have raised £15,000 for biomedical research into ME and this has helped immensely towards better understanding this debilitating neurological illness. It has only been with the help of people like yourselves who give money and attend our fundraisers that we can give hope to the many people living with ME. Unfortunately, the government's continuing refusal to fund biomedical research into ME means that it is vital that we raise even more money in order to find the cause of this illness and therefore a cure for the 7,000 children and adults living with this condition in Northern Ireland.
There is a lot of evidence which supports the fact that ME is a very real physical illness. Recent research highlights the prevalence of postural orthostatic tachycardia syndrome in people with ME, increased oxidative stress which may be responsible for some of the symptoms — such as pain — seen after exercise, abnormal acetylcholine metabolism and increased neutrophil (white blood cell) apop-tosis consistent with an activated inflammatory process. Our own Dr Jonathan Kerr's (originally from Belfast) research into gene expression has also shown that the genes of people with ME express differently from those without.
We are hopeful therefore that with more research we may find the cause of ME and be able to cure it. Failing that, we hope through biomedical research to find appropriate treatments for those living with this condition.
Please support our continued campaign for biomedical research into ME by attending our fundraising event on Friday, October 17 at 8pm in the Felons Club, Falls Road. We have young local talent lined up to take part in A Song 4 ME. There will be a disco, bal- j lots and once again our charity auction including a signed and framed Celtic shirt, Celtic ; mirror, a collection of signed books and much-sought-after tickets for the X-Factor Tour being held in March 2009 -these tickets have not even gone on sale yet. There are many ballots including children's toys etc. Also in attendance on the the night is the Lord Mayor himself, Tom Hartley. Ticket price £5 or pay at the door. All welcome.
Can we take this opportunity to thank yourselves, the Andersontown News, for your continuous support over the past three years in helping us raise much-needed awareness into ME.
Antoinette and Paul Christie and Familv.

Chairty Fundraiser in Aid of ME Research

Charity Fundraiser in Aid of ME Research is to be held in the Felons Club, Belfast on 17 October 2008, tickets £5 - disco, charity auction and other surprises. Dont miss out - book your tickets now. Can pay at door too. A great night out for all - not to be missed. Help raise money for a worthy cause and enjoy a great nights entertainment too.

ME care shoudn’t be down to luck

Thursday, 28 August 2008

Comments from Bristol re Response to Parents in the Belfast Telegraph

http://www.belfasttelegraph.co.uk/opinion/letters/me-care-shoudnrsquot-be-down-to-luck-13955423.html

The letter that Paul and Janet McCann wrote (Specialist help for ME sufferers is lacking, Write Back, August 25), telling of the great help, advice and support they have had for their teenage daughter, who is severely affected with ME, and for which they are relieved and most grateful, illustrates just how enormously variable the provision of care can be for all people with ME.

Especially compared with the experience of the Christie family for their loved one David, similarly affected (ME has stolen my son's life, but there's no help', Belfast Telegraph, August 12), to which they are replying.

But it shouldn't be a matter of luck, should it?

We're all delighted to hear about the ones who get the best care and do well; it's the ones who don't whom we remain concerned about.

It shouldn't be hard to figure that the best currently available care should be the minimum standard for all, rather than being regarded as exceptional for a fortunate few.

DR JOHN H GREENSMITH

Bristol

Specialist help for ME sufferers is lacking

Monday, 25 August 2008-

Comments made in the letter page of the Belfast Telegraph re article below

http://www.belfasttelegraph.co.uk/opinion/letters/specialist-help-for-me-sufferers-is-lacking-13948642.html

We write referring to the Belfast Telegraph article (August 12) on a mother coping with her 15- year-old son David, who suffers from ME.

As this article highlighted only one family's experiences and views, we thought we would like to make you aware of our experience which differs considerably from the one in your article.

We are parents of a teenage daughter who has severe ME. Five years ago as we struggled to find a diagnosis, we watched our formerly active child become bed-bound, unable to hold a conversation and suffer from extreme light and sound sensitivity.

Like the mother in your article, we also despaired over the total lack of specialist services for ME sufferers in Northern Ireland.

However, our experience of support with the illness has been different to that expressed in your article. In contrast, never once has psychiatric help been suggested to us, which confirmed our opinion that ME is not ‘all in the mind’.

In the early days of the illness we searched long and hard for advice and help. As a result, we have been provided with some level of support for which we are very grateful. We have had domiciliary visits and telephone conversations from a local consultant, offering effective medication and advice about ‘pacing’ and general support.

Over the years, visits and practical support have been provided by an occupational therapist and a physiotherapist, both of whom have succeeded in understanding our daughter's illness and have therefore offered only appropriate advice. In addition we have had good support from our local ME Association here in Belfast.

But like the family in your article, we agree that specialist services for ME sufferers here in Northern Ireland are sadly lacking and this needs to be urgently and properly addressed.

But also we would want to commend those professionals who have offered excellent help and advice in our situation.

PAUL AND JANET McCANN

Belfast

Gráinne McCarry : ‘ME has stolen my son’s life, but there’s no help’

The article below appeared in today's Belfast Telegraph

http://www.belfasttelegraph.co.uk/opinion/grinne-mccarry--lsquome-has-stolen-my-sonrsquos-life-but-therersquos-no-helprsquo-13936656.html?startindex=-1

ME sufferer David Christie (15) has to spend 19 hours a day in bed. His mum, Antoinette, talks to Gráinne McCarry

As a young boy, David was involved in everything. He was a scout and he loved trampolining and horse riding. He would have played any sport and he was an Irish national champion in ju-jitzu in 2002. He was no different from any other wee boy. He was always outdoors and he never gave me any trouble. He got involved in everything that was going. He was such a thoughtful child — a wee gentleman.

His sickness began when he developed a rash in February 2003 at the age of 10. The dermatologist at the Royal Children’s Hospital in Belfast had never seen it before. He took photographs and a biopsy and diagnosed David with the skin condition pleva, which is caused by a viral infection. He was given cream for it and still attends the dermatologist to this day about it.

The following year, David began St Mary’s Grammar School. He was so alive and full of energy and he used to walk six miles every day to school and back. Then, all of a sudden he started to lose his energy and we had to give him a lift to the school gate because he wasn’t fit to walk it.

When his condition deteriorated, he didn’t have the energy to walk from the gates up the steep hill into school. We got a special pass from the principal to drive to the school gates. Then, it got to the stage where he couldn’t manage school at all.

After six and a half months of his first year there we had to take him out of school. He wasn’t fit to attend.

He was complaining of chest pains, nausea, fatigue and a general feeling of unwellness. For a long time, we didn’t know what was wrong with him. He was diagnosed with ME (Myalgic Encephalomyelitis) in October 2005.

ME is a multi-symptomatic, organic disease which affects each sufferer differently. David’s symptoms include hallucinations, disturbed sleep, memory loss, aches and pains, concentration difficulties, mouth ulcers, sore throats and balance and co-ordination difficulties.

I was working as a fitness instructor at the time, taking classes in different leisure centres around the city, but I had to give it up to take care of David. I take a couple of classes every week now, but I feel guilty leaving the house.

His schoolfriends have all moved on. I doubt if any of them would recognise David if they saw him today.

He has long curly hair to his shoulder because he hasn’t been able to get it cut. He just looks ill ... he doesn’t look like himself. The ‘David’ everyone else remembers was a swarthy, good-looking wee boy. Now, he can’t even manage to wash his hands and face by himself.

He was given anti-depressants when he was 14 and he just lies in bed 19 hours a day. It wouldn’t be fair to take a photograph of him as he is now. He’s lost touch with everyone. He’s growing up in his bed and has no contact with anyone outside of the house ... just me, his daddy, Paul, and his two brothers, Paul junior and Conor.

Even to get him to his medical appointments is a struggle. People don’t understand the effort behind it all. The consultant doesn’t see what we have to do to get David to the hospital. For a lunchtime appointment, I have to start waking him at 9.30am in order to get him washed and dressed on time. His muscles have deteriorated so much that if he could make it down the stairs that would be an extremely good day for him. He only ever goes outside when he has a hospital appointment.

Another ME sufferer explained the disease to me as living in a semi-coma. When David is awake I tell him things and the next time he wakes up he can’t remember them. He couldn’t believe it when I told him that his big brother Paul was 21. He just kept repeating “21”. He was so shocked.

Life is passing him by and it breaks my heart to see him like this. He should be at school studying and hanging out with his friends. He’ll never get those years back. His time as a teenager is a very important part of his formative years.

Life is continuing on when he is asleep. A few weeks ago he asked me when Mother’s Day was. When I told him it was over, he was so annoyed. I can’t even say he lives his life because he doesn’t live. He exists. It’s a living death.

His diet’s very poor, he’s underweight. He’s growing into a young man in bed. We didn’t know much about the illness until David was diagnosed with it. I’d heard of it, but I didn’t realise how severe it was.

Terms like ‘yuppy flu’ and ‘the sleepy sickness’ are an insult to ME sufferers. ME has been a recognised illness by theWorld Health Organisation since 1969 and by the Royal Society of Medicine since 1978.

There’s absolutely no help for David here. ME sufferers here are offered a psychiatrist in Northern Ireland. David does not need a psychiatrist. He needs someone to help him get better.

There are two types of therapy available here — Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET).

The first tries to get the patient to change their attitude towards their illness. David doesn’t have an attitude towards his illness. He doesn’t have the energy to have an attitude.

The other option, GET, is too dangerous for David as his muscles are extremely weak.

What is being offered in Northern Ireland is psychiatric care. ME is not a psychiatric illness. There is a significant amount of research out there proving that ME exists. Recently, Dr Derek Enlander, an Ulster-born doctor who practices in New York, came over to see a small number of ME sufferers in Belfast at a private clinic on the Antrim Road.

From David’s medical notes, he was able to tell me that my son tested positive for the Cosackie B virus which is a variant of ME when he was 18 months old. He took sick with a virus then and it must have been in his system since.

Dr Enlander said that David’s immune system was dysfunctional. He was given tablets and medicine containing vitamin and minerals, and a weekly injection. This is not a cure, but if it works it could boost his immune system by 65%. It costs me £240 every month to pay for this and I can’t afford it.

David got his heart tracked by a scanning machine and it showed that his heartbeat was irregular, also.

I’m more angry now than I’ve ever been. To think that this medicine I’ve received from Dr Enlander has been out there all this time. We just didn’t know about it. It angered me that David’s been left to deteriorate this far.

If we’d known about this sooner, David could have been relieved of some of his suffering.

It’s a national scandal that ME sufferers can only get this type of treatment if they are prepared to pay for it. David has been neglected for far too long. He has been left to waste away in his bed. It’s so desperately inhumane.”

Could ME be caused by parasites in the brain?

May be reposted:

Could ME be caused by parasites in the brain?

Anyone with ME knows that our muscles, brains and nerves are under
attack. Logically, there must be something that has either damaged
our brains, and the nerves that leave the brain and spine to control
our muscles, or there is something that is still continually
attacking our whole nervous system.

What sort of thing, apart from trauma to the brain through accidents
etc, can do this? Most doctors end up by saying we must have had a
virus, after they've ruled out things like diabetes, thyroid disease
and blood disorders such as anaemia.

They will of course have checked that we don't have one of the nasty
viruses, or at least one would hope so, and as long as we don't have
something as contagious as AIDS (which is a public health risk) and
we are not dangerously ill or dieing, then we are left to recover as
best we can.

Anti-viral drugs are very expensive but some such as Acyclovir are
used to treat certain Herpes virus infections. Even without anti-
viral drugs, many viral infections usually diminish with time, so the
normal medical treatment would be to order rest and recuperation, and
perhaps to take well-proven supplements to strengthen our immune
systems.

But how many of us are aware that there are bacterial and parasitic
infections that can cause the very same symptoms as ME? The bacteria
and parasites can cross into the brain and cause anything from
fatigue to schizophrenia, or from movement disorders to outright
psychoses.

Hundreds of millions of people in the world are infected by the
malarial parasite, which is carried by mosquitoes, and which causes
great fatigue and death. There is a chance of catching malaria in the
UK but the symptoms would not normally be confused with the ones seen
in ME. There could be a problem though that strong healthy people in
Britain have parasites like malaria and are not showing full-blown
symptoms.

In the warmer regions of the world, over 250 million people are
affected by such diseases as onchocerciasis (river blindness) and
trypanosomiasis (sleeping sickness, and the similar variation, Chagas
Disease). In temperate zones like ours, there is an infection called
Lyme disease, spread by the bites of ticks and possibly by mosquitoes
and flies, which is now believed to have infected over 20 million
Americans and hundreds of thousands of Europeans.

Onchocerciasis is caused by a tiny roundworm, called a nematode,
while a protozoan (a single-celled organism like an amoeba) causes
trypanosomiasis. Lyme disease is due to a bacterium, a very unusual
bacterium related to the one that causes Weil's disease and the one
that causes Syphilis

Onchocerciasis rarely leads to blindness, so the name river blindness
is a bit misleading. Usually, the victims suffer fatigue, malaise,
backache, headache and many other symptoms that ruin their lives long
before they go blind.

Trypanosomiasis is more deadly but tends to occur in sporadic
epidemics. Lyme disease, however, causes symptoms and even genetic
markers for disease that are identical to those seen in ME. The UK
government, when pressed, admitted recently that Lyme disease could
cause ME.

But why worry about these things then, unless we travel a great deal
to tropical or equatorial areas? Or frequently get bitten by ticks?
And why worry even then, when we have such state of the art medicine
in the UK, which would soon detect any parasitic infection and
rapidly treat it?

Unfortunately, it's becoming obvious that the UK has been hopeless at
identifying people with these diseases. There is documented evidence
from a clever and dedicated researcher, that onchocerciasis has been
repeatedly missed as the cause of fatiguing illness, especially in
armed forces veterans. My own research over the last 4 years has led
me to discover that tick-borne infections have been ignored and under-
diagnosed in Britain. This is despite evidence from the World Health
Organisation that Lyme disease was already widespread and endemic in
Britain in 1989.

The latest medical knowledge, from several medical sources, is that
ticks are carrying the Lyme bacterium, protozoan infections, semi-
virus like organisms called Rickettsias, and also, perhaps worst of
all, they are capable of transmitting nematode worms. They are not
exactly like the nematodes seen in onchocerciasis, but are equally
dangerous.

Some people believe that a worm infection could be preventing many
people from getting better even though they have received
antibiotics. Specific drugs have to be used to get rid of nematode
worms. In Egypt from 2002 onwards, the whole population was given
Ivermectin and other drugs over a 4-year period, because nematode
infections are so widespread there.

I have personally spoken to 5 Lyme patients who have had samples of
their blood taken so that it could be viewed under the microscope.
They have actual photos, taken down the microscope, of these strange
worms swimming in their blood. The worms are believed to block our
lymph vessels and perhaps the small blood vessels. They probably hide
from our immune systems in the lungs and intestine.

Some people with ME who have had successful therapy with herbs,
especially Chinese herbs, may have unknowingly been killing nematode
worms. Ancient peoples knew they were vulnerable to parasites, but it
is something we seem to have forgotten about in the modern age.

There are many others with Lyme disease who have written on the
Internet that they have begun to take anti-worming medicine such as
Ivermectin. It is still early days yet, as to whether people will be
able to be cured; the treatment has to be taken repeatedly over a
long time..

For the last 3 years, questions have been asked in parliament about
the numbers of undiagnosed cases of Lyme disease and tick-borne
diseases in general - (reply: "not known or even looked for") and the
adequacy of the diagnostic tests - (reply: "tests are completely top
notch and rarely miss a case, but we are trying to find better
ones"). Everyone wonders how the Health Ministry can say one minute
that the tests are fine, then the next minute that they are working
really hard to develop better ones.

The government are either completely ignorant about the situation, or
have decided for some reason that they don't think there is really a
problem.

No one really knows how many people with ME could have parasitic
infections. Hardly anyone will have been tested for them, and even
the tests for the borrelia infection of Lyme disease are said to miss
at least 50% of cases. It might not just be tick bites that carry
these diseases because the Lyme bacterium has been found in many of
the biting insects and flies. There is even evidence that the disease
can be passed from mother to child, or through intimate contact.

Everyone has parasites in their bodies; some of them are "friendly
bacteria" and most of them, even tiny nematode worms, are harmless
because our immune systems can usually keep them at a low level. We
pick things up from the soil, our pets, even from dust particles in
the air.

A friend who lived in South Africa told me that every 6 months, she
and her family, as well as the pets, would all be given worming
tablets. It was regarded as a normal sensible thing to do. In the
UK, there are over-the-counter drugs such as Pripsen, which we can
take to get rid of tapeworms or threadworms. But the nematode type of
worm, the microfilaria which we can't see without a microscope, will
not be cured by the Pripsen type of medicine, especially if the
infection has been in our bodies for more than a few months.

It's a good idea though, to perhaps think of worming ourselves on a
regular basis, because it could at least slow down any nematodes.
Perhaps we all need to go to the vets!

MEA letter to Rt Hon James Purnell

MAY BE REPOSTED

MEA letter to Rt Hon James Purnell, Secretary of State for Work and Pensions, available at:

http://www.meassoci ation.org. uk/content/ view/611/ 70

ENDS

EXTREMELY URGENT – Re Prof Basant Puri Study – PERMISSION TO

> EXTREMELY URGENT – Re Prof Basant Puri Study – PERMISSION TO
REPOST.
>
> Calling all physically fit carers, friends and relatives of ME
> patients. Your help is very urgently needed and may be of great
> assistance to the UK ME community.
>
> Professor Basant Puri urgently needs 10 PHYSICALLY FIT individuals
> between the ages of 18 to 55 to contact him concerning
participation
> in his current ME/CFS biomedical brain studies on ME/CFS patients.
> These individuals will act as healthy `control-subjects' in his
study
> and must not have ME/CFS or have had any major illness. They will
> attend Hammersmith Hospital on ONE of two dates in London (Sunday
3
> August OR Sunday 10 August 2008) for MRI brain-imaging, cognitive
> function tests and an EEG. Candidates must not have any metal
> implants in their body in order to go through the MRI scanner:
most
> dental work is safe in this respect but needs to be mentioned to
> Professor Puri to be verified. Participants who have worked with
> grinding metals/sparks must also mention this. There is also space
> for one more properly diagnosed ME patient to participate in the
> study on one of these dates.
>
> Participants will need to fund their own travel costs but there is
> ample parking available in the Hammersmith Hospital car park.
Please
> do NOT contact me about this matter but please do contact
Professor
> Puri direct as soon as you can for full details if you can
> help/participate. His email address is:
>
> basant.puri@ ...
>
> It is very important for the ME community that this work is
completed
> as soon as possible and that these study slots are filled. PLEASE
> HELP. Treat yourself to an interesting trip to London in aid of a
> good cause!
>
> Many thanks indeed.
>
> Kev Short.
> Anglia ME Action.
>
> PERMISSION TO REPOST.

Website for patients to rate GPs and hospital consultants

Website for patients to rate GPs and hospital consultants
A website launching today, iwantgreatcare.org, will let patients rate and review every medic who has treated them


http://www.iwantgreatcare.org/

Letter #4 in reply to "You ain't crazy. It might be Chronic Fatigue Syndrome

Letter #4 in reply to "You ain't crazy. It might be Chronic Fatigue Syndrome" in Frost Illustrated, Fort Wayne, Indiana, USA, 8 July 2008

I'm reposting Mary Schweitzer's letter here, as the link is a bit
confusing~~Liz

Thank you for taking the disease so misnamed, "Chronic Fatigue
Syndrome," more seriously than the media normally does. I have been
fighting this illness for two decades, however, and, regrettably, at
this stage of the game everything is NOT going to be all right for
those who have it.

I have been in cutting edge studies that show I have an abnormal
immune
defect in the body's biochemical antiviral pathway which makes it
extremely difficult to fend off viruses, and I also have a low
natural
killer cell count. I have chronically recurring Epstein-Barr, and a
vicious virus originally discovered in AIDS patients called HHV-6A
(Human Herpesvirus 6, Variant A), which gave me muscle pain,
encephalitis, and significant CNS disruption - in other words,
Myalgic
Encephalomyelitis, which was what the disease was called in Britain
before the U.S. NIH came up with the name "chronic fatigue syndrome"
(at the time believing it was chronic Epstein-Barr virus). A
scientific committee voted (not unamimously) for the new name, but it
was promoted by the head of infectious diseases at NIH at the time.

HHV-6, Variant B, causes roseola and is very common. It is not
possible
at the moment for commercial laboratories to distinguish between the
variants, so there can be a lot of confusion. However, an active
case
of HHV-6 in an adult usually means they have Variant A.

The disease caused terrible pain in addition to the muscle aches:
migraine-level headaches, and constant severe pain behind my eyes and
in the back of my neck. I had trouble understanding what was said to
me, and trouble saying what I meant - I would often use an entirely
wrong word, such as "map" for "tablecloth". I once poured an entire
cup of coffee into a silverware drawer convinced it was a cup. I had
ataxia, which made it difficult to walk and impossible to perform
normal functions like loading a dishwasher - I would slam one glass
unto another, unable to gauge the distance properly. Eventually I
became too weak to walk even a few feet. I only left the house if
someone in the family took me in a wheelchair, which they had to
push,
and I was mostly bedridden. Years later, when I was much better, I
still scored so low on an oxygen-reuptake treadmill test that I would
be considered permanently disabled on that basis alone.

I benefitted from an experimental drug that was both an antiviral and
an immune modulator, "Ampligen," which is unfortunately still in
Phase
III development. In six months, my biomarkers were gone. I could
read
again, walk again (though slowly), drive a car again. I cannot
explain
the sheer joy of being able to walk on a beach when you thought you
never would again. And I danced at my son's wedding that August.

The cost to my family for that one drug,which required twice weekly
infusions, was $20,000 in cash. I lost the drug in February. The
last
time I had to go off it,I did well for a year, and then relapsed
badly.
I am not looking forward to a repeat of that relapse, and hope that
perhaps a combination of an antiviral such as Valcyte (being used at
Stanford by Robert Montoya) and perhaps IM gamma globulin can help me
stave off a reappearance of HHV-6A and the 37kDa Rnase-L immune
defect.

I am fortunate in having been a college professor, married to a
college
professor, and therefore familiar with the means to find out what
testing, and what experimental drugs, might be available to me. It
took four years from my first collapse in my office before I finally
tested positive for something, however. And I was lucky that
Ampligen
worked for me, and that my family was willing (and able) to sacrifice
so we could pay for it.

Think about what was said in your own article: only 15% (10% by some
studies) of patients have any idea what is wrong with them. The vast
majority of those with a diagnosis are white and upper middle class.
That tells you something about who is not being diagnosd. I live
near
a major east coast city and there is no doctor in driving distance
who
understands my disease. Nobody in public clinics understands it.

I was sicker than most people who have it - I seemed to have a
progressive form, what some British patients call a "twenty-five
percenter" because they believe 25 percent have the disease that
badly. But imagine what my life would have been like without my
family, and without access to medical care. For me, it was not a
matter of finding work difficult - even working a cash register at
McDonald's would have been impossible. I know people with the
disease
who had to live on the streets for a time - I am certain there must
be
more. I used to have blackouts - what happens to a person who has
blackouts but nobody believes there is anything wrong wih them? What
happens to people as sick as I was, without medical care or a family
to
take care of them?

Three years ago, the 23-year-old son of a dear friend died in his
sleep. He had been diagnosed with chronic fatigue syndrome since
puberty. But the autopsy showed that he died of a longstanding viral
infestation - he died of myocarditis. There have been other deaths.
The CDC simply change the diagnosis when one is brought to their
attention.

Ultimately, Chronic Fatigue Syndrome is a misdiagnosis. I have an
abnormal immune system and am beset with disabling viruses, and I
have
the biomarkers to prove it. Other people diagnosed with CFS may have
different medical problems - but they are all serious. In bundling
them all together unto a vague concept of tiredness, the CDC has done
us all a great disservice - and in the process, endangered the health
of the nation. A million people have CFS according to the best
independent study - and many of us were contageous at some point in
the
disease. The name tells you nothing - chronic fatigue on this level
is
also part of congestive heart failure, tuberculosis, hepatitis - most
serious diseases. It did lead me to scientists working on biomarkers
and treatments, but for most of the public the name has prevented
appropriate diagnosis and treatment.

Thank you again for bringing this heartbreaking disease to the
public's
attention.

Mary Schweitzer