http://www.fabulousmag.co.uk/health/index.php
'I was so exhausted I couldn't move' (On the couch with Dr Hilary Jones: Suzi Walker, Fabulous Mag, News of the World, 29 June 2008)
Every week a celeb asks our fabulous doctor for a diagnosis. This week it's TV presenter Suzi Walker, 36
Some days I wake up feeling exhausted.
My head feels cloudy, my joints hurt and the smallest decision has me in tears.
I feel so weak I can't even climb the stairs.
I have Myalgic Encephalopathy (ME), or Chronic Fatigue Syndrome.
For years I didn't know what was wrong with me, and at one point I felt so awful, I thought it was cancer.
My symptoms began nine years ago, after my daughter Sophie was born.
I contracted post natal pre-eclampsia, and within hours of her birth, I had a fit and went into a coma.
When I woke two days later I felt weak, and I continued to feel lethargic and achy.
Four years later my GP finally diagnosed ME but said there was no cure, which was devastating.
Over the years I've spent thousands of pounds looking for my own 'cure', from vitamin injections to faith healers, but nothing has worked.
Stress is a trigger so I try not to get too anxious.
I also try to eat well, but it can be hard if I'm feeling dreadful.
I once got so thin that I was hospitalised and had to be tube fed.
Overdoing it at the gym can cause a bad attack of fatigue.
Is there anything I can do to keep symptoms at bay?
Suzi is raising awareness for the charities Action for ME (Afme.org.uk) and ME Research UK (Meresearch.org.uk).
DR HILARY'S DIAGNOSIS
In its mildest form, ME causes physical weakness, extreme tiredness, emotional and psychological distress, sleep disturbance and depression.
At its worst, it is totally disabling, making people bed-bound and dependent on others.
Although there is no 'cure', it usually improves with time and there are things you can do that can help.
First, graded exercises with realistic goals and plenty of rest in-between builds stamina.
Then cut out caffeine and alcohol and take extra magnesium and omega-3 fatty acid supplements.
An anti-inflammatory tablet like ibuprofen can ease joint and muscle pains and headaches, while talking therapy and antidepressants can lift mood.
The good news is that ME usually disappears within a few years on its own.
But in the meantime, joining a local support group and learning how to handle stress effectively can make a world of difference.
If you would like to reply to Dr Hilary Jones , the News of the World letters e-mail address is
your.letters@notw.co.uk
Sunday 29 June 2008
Saturday 28 June 2008
12th MAY M.E. AWARENESS DAY - PRESENTATIONS TO 10 DOWNING STREET:
12th MAY M.E. AWARENESS DAY - PRESENTATIONS TO 10 DOWNING STREET:
* On arrival into London and making my way by mobility scooter along
Charing
Cross Road down through Whitehall, it was clear the glorious weather had
brought out millions of tourist on to the streets of London..!
Virtually the whole
of Whitehall had security barriers both sides of the road, media cameras
and armed police everywhere (sure! the presentations were important
- hadn't realised just how much though! :)
* Due to the nature of M.E. and last minute transport problems - it was
clear
the 'Presentation Group' would be small - reduced from an original list
of eight
to three:Victoria, Apolonia and myself!
* However, Gordon Brown MP at 10 Downing Street and Ann Keen (MP)
Under Secretary of State for Health at the Department of Health,
Richmond House
were sufficiently informed of the real need for Research into M.E. and,
of the
ongoing
plight of those affected by Myalgic Encephalomyelitis (M.E.) including
their families,
friends and carers with the following presentations:
1. MP letter, and information on behalf of those affected by Severe M.E.
on
behalf of the 25% M.E. Group for People with severe M.E.
2. Covering Letter to both Gordon Brown and Ann Keen, by
Di Newman
3. Letter and information from BRAME to Gordon Brown and Ann Keen
on behalf of Tanya and Christine Harrison
4. Factsheets and information by The Young M.E. Sufferers Trust, Tymes
Trust
by a mother whose daughter has severe M.E.
5. M.E. and the Implications of the Mental Health and Mental Capacity Acts,
by Di Newman
6. A selection of research studies into M.E. by MERUK (M.E. Research UK)
including
several 'Breakthrough' magazines and factsheets ('Response to Exercise'
and 'The NICE Guidelines - What's the problem?' re. M.E.)
7. Letters regarding the Royal Society of Medicine (RSM) Conference
on 'Chronic Fatigue Syndrome: Dr Scadding letter (21st April 08), David
Kemp CO
-CURE Digest, 'Details of One Recent + Three Forthcoming Conference on
M.E./CFS', RSM Protest letter from Joan Crawford, on behald of Doris
Jones
8. Letter on behalf of 'Miss Z' who has severe M.E. detained under Section
3 of
the Mental Health Act on 9th April 2008
9. Dr Terry Mitchell and Dr Anne Gerkin 2007 powerpoint presentation on
Myalgic
Encephalomyelitis (M.E.) to the Peterborough M.E. & CFS Society Self
Help
Group
* Following the presentations, we sought shade under a huge oak tree in
nearby
St. James Park for a picnic. Many topics affecting the M.E. Community
were discussed:
disbelief, denial, ignorance, destitution, loneliness, isolation,
destroyed relationships:
partners, families, friendships and careers, benefits cuts/delays: being
unable to 'prove' the extent of the illness to warrant appropriate benefits,
equipment and assistance etc etc.
* And how, despite huge hurdles, elephant traps and pitfalls - someone with
M.E., still manage somehow to 'salvage' something from their previous
'life' (pre-M.E.) through poetry, card-making, photography, art, prayer,
etc.
15th MAY M.E./CFS OPEN FORUM - HOUSE OF COMMONS:
* The journey across London was much the same as the 12th May, although it
poured of
rain the whole day... After stopping in Trafalgar Sq for some soup I
made my way
to Victoria Tower Garden's - adjacent to the Houses of Parliament.
* Along with the very few people hurrying along with wind-blown umbrella,
I
decided to make my way to the NCP and meet those coming in by car to
attend the 15th May event in House of Commons. With wind-blown
umbrellas'
- we made our way towards the entrance of Parliament.
* Once through the 'new' security building we aimed for the 'new'
restaurant
to dry out/warm up and soon met Polonia and Victoria there! Once
refreshed
we started approaching Committee Room Six and met Annette Barclay.
* Six, in all had arrived for the M.E./CFS Open Forum: Apolonia, Victoria,
Hugh,
Annette, Ciaran and myself - and despite most of us requesting our MPs
to
join the meeting - not one arrived! And rather than have to queue for
the
'Green Card' system (where one can summon their MP to meet with them)
- especially following a long and rain-soaked journey... We commenced
with the
agenda in hand and would welcome any MP, should they arrive and join
us...
* Each agenda item was fully covered and a CD recording for clarity
of the business was undertaken. A summary account of the meeting
will
be available in due course.
a. A brief letter from Trevor Wainwright, Event Patron and, Christine and
Tanya Harrision from BRAME, who were unable to attend to the events due
to pressure of other commitments, were read out at the meeting.
b. The main points discussed were:
(i) Mental Health & Mental Capacity Acts
(ii) Recent Guidelines on M.E./CFS: (NICE, NHS-Plus, DWP)
(iii) UK M.E./CFS Clinics & Services & Funding
(iv) RSM Conference
(v) National M.E./CFS Charity Representation
c. A number of other significant issues were raised under 'AOB' and
will be covered in the minutes of the meeting which will be available
in the near
future.
The 2009 12th May M.E. Peoples Day Event will be taking place on Tuesday
12th May.
With kind regards
Di Newman
Event Organiser
po Box 775
Peterborough
Cambridgeshire
PE1 4WZ
01733 552872
07742 615 952
12MayM.E.PeoplesDay _Events@live. co.uk
* On arrival into London and making my way by mobility scooter along
Charing
Cross Road down through Whitehall, it was clear the glorious weather had
brought out millions of tourist on to the streets of London..!
Virtually the whole
of Whitehall had security barriers both sides of the road, media cameras
and armed police everywhere (sure! the presentations were important
- hadn't realised just how much though! :)
* Due to the nature of M.E. and last minute transport problems - it was
clear
the 'Presentation Group' would be small - reduced from an original list
of eight
to three:Victoria, Apolonia and myself!
* However, Gordon Brown MP at 10 Downing Street and Ann Keen (MP)
Under Secretary of State for Health at the Department of Health,
Richmond House
were sufficiently informed of the real need for Research into M.E. and,
of the
ongoing
plight of those affected by Myalgic Encephalomyelitis (M.E.) including
their families,
friends and carers with the following presentations:
1. MP letter, and information on behalf of those affected by Severe M.E.
on
behalf of the 25% M.E. Group for People with severe M.E.
2. Covering Letter to both Gordon Brown and Ann Keen, by
Di Newman
3. Letter and information from BRAME to Gordon Brown and Ann Keen
on behalf of Tanya and Christine Harrison
4. Factsheets and information by The Young M.E. Sufferers Trust, Tymes
Trust
by a mother whose daughter has severe M.E.
5. M.E. and the Implications of the Mental Health and Mental Capacity Acts,
by Di Newman
6. A selection of research studies into M.E. by MERUK (M.E. Research UK)
including
several 'Breakthrough' magazines and factsheets ('Response to Exercise'
and 'The NICE Guidelines - What's the problem?' re. M.E.)
7. Letters regarding the Royal Society of Medicine (RSM) Conference
on 'Chronic Fatigue Syndrome: Dr Scadding letter (21st April 08), David
Kemp CO
-CURE Digest, 'Details of One Recent + Three Forthcoming Conference on
M.E./CFS', RSM Protest letter from Joan Crawford, on behald of Doris
Jones
8. Letter on behalf of 'Miss Z' who has severe M.E. detained under Section
3 of
the Mental Health Act on 9th April 2008
9. Dr Terry Mitchell and Dr Anne Gerkin 2007 powerpoint presentation on
Myalgic
Encephalomyelitis (M.E.) to the Peterborough M.E. & CFS Society Self
Help
Group
* Following the presentations, we sought shade under a huge oak tree in
nearby
St. James Park for a picnic. Many topics affecting the M.E. Community
were discussed:
disbelief, denial, ignorance, destitution, loneliness, isolation,
destroyed relationships:
partners, families, friendships and careers, benefits cuts/delays: being
unable to 'prove' the extent of the illness to warrant appropriate benefits,
equipment and assistance etc etc.
* And how, despite huge hurdles, elephant traps and pitfalls - someone with
M.E., still manage somehow to 'salvage' something from their previous
'life' (pre-M.E.) through poetry, card-making, photography, art, prayer,
etc.
15th MAY M.E./CFS OPEN FORUM - HOUSE OF COMMONS:
* The journey across London was much the same as the 12th May, although it
poured of
rain the whole day... After stopping in Trafalgar Sq for some soup I
made my way
to Victoria Tower Garden's - adjacent to the Houses of Parliament.
* Along with the very few people hurrying along with wind-blown umbrella,
I
decided to make my way to the NCP and meet those coming in by car to
attend the 15th May event in House of Commons. With wind-blown
umbrellas'
- we made our way towards the entrance of Parliament.
* Once through the 'new' security building we aimed for the 'new'
restaurant
to dry out/warm up and soon met Polonia and Victoria there! Once
refreshed
we started approaching Committee Room Six and met Annette Barclay.
* Six, in all had arrived for the M.E./CFS Open Forum: Apolonia, Victoria,
Hugh,
Annette, Ciaran and myself - and despite most of us requesting our MPs
to
join the meeting - not one arrived! And rather than have to queue for
the
'Green Card' system (where one can summon their MP to meet with them)
- especially following a long and rain-soaked journey... We commenced
with the
agenda in hand and would welcome any MP, should they arrive and join
us...
* Each agenda item was fully covered and a CD recording for clarity
of the business was undertaken. A summary account of the meeting
will
be available in due course.
a. A brief letter from Trevor Wainwright, Event Patron and, Christine and
Tanya Harrision from BRAME, who were unable to attend to the events due
to pressure of other commitments, were read out at the meeting.
b. The main points discussed were:
(i) Mental Health & Mental Capacity Acts
(ii) Recent Guidelines on M.E./CFS: (NICE, NHS-Plus, DWP)
(iii) UK M.E./CFS Clinics & Services & Funding
(iv) RSM Conference
(v) National M.E./CFS Charity Representation
c. A number of other significant issues were raised under 'AOB' and
will be covered in the minutes of the meeting which will be available
in the near
future.
The 2009 12th May M.E. Peoples Day Event will be taking place on Tuesday
12th May.
With kind regards
Di Newman
Event Organiser
po Box 775
Peterborough
Cambridgeshire
PE1 4WZ
01733 552872
07742 615 952
12MayM.E.PeoplesDay _Events@live. co.uk
Friday 27 June 2008
RSM CFS Conference update on release of webcast
May be reposted
RSM CFS Conference: an ETA for webcast
May be reposted
RSM CFS Conference update on release of webcast
This morning (27 June) I telephoned the office of Mr Ian Balmer, Chief
Executive of the Royal Society of Medicine for an update on the release of a
webcast of the presentations made at the RSM's CFS conference on 28 April.
I spoke to Mr Balmer's PA, Ms Joanna Rose, who told me the following:
That Power Point slides used during the presentations are expected to be
available from the RSM website from next Monday.
That a webcast of the presentations is expected to be completed and
available from the website by the end of next week.
I asked Ms Rose whether all the presentations would be available on the
website since there had been some concerns that permission might not yet
have been obtained from all presenters: Ms Rose advised me that it was her
understanding that all presentations will be included.
The page on the RSM website for RSM webcasts is:
http://www.rsm. ac.uk/academ/ video.php
I will update as soon as I can confirm that the Powerpoint Presentations
have been published.
Suzy Chapman
RSM CFS Conference: an ETA for webcast
May be reposted
RSM CFS Conference update on release of webcast
This morning (27 June) I telephoned the office of Mr Ian Balmer, Chief
Executive of the Royal Society of Medicine for an update on the release of a
webcast of the presentations made at the RSM's CFS conference on 28 April.
I spoke to Mr Balmer's PA, Ms Joanna Rose, who told me the following:
That Power Point slides used during the presentations are expected to be
available from the RSM website from next Monday.
That a webcast of the presentations is expected to be completed and
available from the website by the end of next week.
I asked Ms Rose whether all the presentations would be available on the
website since there had been some concerns that permission might not yet
have been obtained from all presenters: Ms Rose advised me that it was her
understanding that all presentations will be included.
The page on the RSM website for RSM webcasts is:
http://www.rsm. ac.uk/academ/ video.php
I will update as soon as I can confirm that the Powerpoint Presentations
have been published.
Suzy Chapman
Thursday 26 June 2008
Little Help for ME sufferers
Little Help for ME sufferers
Linda Crowhurst
Eastern Daily Press June 25th 2008 p. 18
(may be reposted)
All ME sufferers in Britain and around the world will draw hope from
Kevin Short 's momentous victory in court (Norwich ME suffer wins
court ruling EDP June 19th 2008). I am severely affected and my ME
needs go completely unmet in Norfolk.
Luckily, I have a very supportive GP, who knows that my condition is
neurological, but his hands are tied when it comes to referring me to
consultants, because there is not the interest nor the knowledge nor
the understanding or the availability of biomedical clinicians to
treat me. I am left with virtually nothing, no hope and worse, no
biomedical understanding to ease the pain, the paralysis, the numbness,
the digestive, the autonomic and endocrine issues : the fifty plus
physical symptoms that I experience .
The level of sickness in severe ME has been compared to that of an
AIDS sufferer two months before death or a terminally ill cancer
patient and I have been like this for almost fifteen years, while all
that NICE is prepared to recommend is useless "activity management";
without dealing with the underlying disease.
I need proper tests, treatment and advice on specific symptoms and
issues. I want to be able to access services in Norfolk, as any other
person with a chronic illness is able to do.
Linda Crowhurst
Eastern Daily Press June 25th 2008 p. 18
(may be reposted)
All ME sufferers in Britain and around the world will draw hope from
Kevin Short 's momentous victory in court (Norwich ME suffer wins
court ruling EDP June 19th 2008). I am severely affected and my ME
needs go completely unmet in Norfolk.
Luckily, I have a very supportive GP, who knows that my condition is
neurological, but his hands are tied when it comes to referring me to
consultants, because there is not the interest nor the knowledge nor
the understanding or the availability of biomedical clinicians to
treat me. I am left with virtually nothing, no hope and worse, no
biomedical understanding to ease the pain, the paralysis, the numbness,
the digestive, the autonomic and endocrine issues : the fifty plus
physical symptoms that I experience .
The level of sickness in severe ME has been compared to that of an
AIDS sufferer two months before death or a terminally ill cancer
patient and I have been like this for almost fifteen years, while all
that NICE is prepared to recommend is useless "activity management";
without dealing with the underlying disease.
I need proper tests, treatment and advice on specific symptoms and
issues. I want to be able to access services in Norfolk, as any other
person with a chronic illness is able to do.
Tuesday 24 June 2008
TymesTrust
A reminder that you can sign up for the Trust's news Alerts, which can be
reposted or used in group newsletters. A copy of the first alert is below.
You will only receive news from the Trust - no emails from anyone else.
======
TYMES TRUST ALERT
1st June 2008
Jane Colby
Executive Director
The Young ME Sufferers Trust
www.tymestrust. org
======
To subscribe to or unsubscribe from
this mailing list, visit www.tymestrust. org.
======
GOVERNMENT THANKS TRUST FOR INPUT TO NEW EDUCATION WHITE PAPER
======
The Government has thanked The Young ME Sufferers Trust for our input into
the new Education White Paper 'Back on Track : A strategy for modernising
alternative provision for young people'. We are pleased to note the
inclusion of virtual education in the White Paper.
At the invitation of Parliamentary Under-Secretary of State for Schools Lord
Adonis, the Trust's Founder Patron Lord Clement-Jones, Chair Keith Harley,
Executive Director Jane Colby and Director of the Nisai Virtual Academy
Dhruv Patel met with the Deputy Director of the Special Educational Needs
and Disability Division of the Department of Children Schools and Families.
We presented the results of the education partnership between the Trust and
the NVA in which children with ME obtained higher grades and better overall
results using interactive virtual education than did healthy children
attending school.
We also explained that children's educational rights are often over-ridden
by the way in which their condition is medically managed.
The White Paper states: 'Where a pupil remains in alternative provision
because they are not ready to be re-integrated to a mainstream or special
school, it is essential that they nonetheless receive an education that puts
them on the path to success in adulthood. This is not just the right thing
for them, but for their local community and for society more widely.'
It continues '...we must learn from the best and support innovation.'
Chapter 7, 'Learning from the best and supporting innovation' speaks of
'building on what works'.
The Deputy Director of the SEN and Disability Division has written to Lord
Clement-Jones: 'the meeting we held did inform our thinking. Please see
Chapter 7 (from page 50) onwards where you will see in para 7.4 a commitment
to run innovative pilot projects for alternative provision, including:
"e-learning and virtual provision, particularly for pupils who cannot attend
school due to health needs."'
The Trust has been invited to respond to the White Paper.
======
You are welcome to redistribute or reprint this email without
seeking our permission provided: 1) you do not abbreviate, add
to, or change the text in any way; 2) the authorship information
is retained; and 3) www.tymestrust. org is credited as the source.
Jane Colby is Executive Director of The Young ME Sufferers Trust.
She was a Headteacher for nine years, a member of the government
Chief Medical Officer's Working Group on CFS/ME and co-authored
ME/CFS In UK Schools, the largest epidemiological study of ME to
date. She is a member of the National Association of Educational
Inspectors, Advisers and Consultants (now ASPECT), a life member
of the National Association of Head Teachers and a Fellow of the
Royal Society of Arts.
Copyright (c) 2008 The Young ME Sufferers Trust
reposted or used in group newsletters. A copy of the first alert is below.
You will only receive news from the Trust - no emails from anyone else.
======
TYMES TRUST ALERT
1st June 2008
Jane Colby
Executive Director
The Young ME Sufferers Trust
www.tymestrust. org
======
To subscribe to or unsubscribe from
this mailing list, visit www.tymestrust. org.
======
GOVERNMENT THANKS TRUST FOR INPUT TO NEW EDUCATION WHITE PAPER
======
The Government has thanked The Young ME Sufferers Trust for our input into
the new Education White Paper 'Back on Track : A strategy for modernising
alternative provision for young people'. We are pleased to note the
inclusion of virtual education in the White Paper.
At the invitation of Parliamentary Under-Secretary of State for Schools Lord
Adonis, the Trust's Founder Patron Lord Clement-Jones, Chair Keith Harley,
Executive Director Jane Colby and Director of the Nisai Virtual Academy
Dhruv Patel met with the Deputy Director of the Special Educational Needs
and Disability Division of the Department of Children Schools and Families.
We presented the results of the education partnership between the Trust and
the NVA in which children with ME obtained higher grades and better overall
results using interactive virtual education than did healthy children
attending school.
We also explained that children's educational rights are often over-ridden
by the way in which their condition is medically managed.
The White Paper states: 'Where a pupil remains in alternative provision
because they are not ready to be re-integrated to a mainstream or special
school, it is essential that they nonetheless receive an education that puts
them on the path to success in adulthood. This is not just the right thing
for them, but for their local community and for society more widely.'
It continues '...we must learn from the best and support innovation.'
Chapter 7, 'Learning from the best and supporting innovation' speaks of
'building on what works'.
The Deputy Director of the SEN and Disability Division has written to Lord
Clement-Jones: 'the meeting we held did inform our thinking. Please see
Chapter 7 (from page 50) onwards where you will see in para 7.4 a commitment
to run innovative pilot projects for alternative provision, including:
"e-learning and virtual provision, particularly for pupils who cannot attend
school due to health needs."'
The Trust has been invited to respond to the White Paper.
======
You are welcome to redistribute or reprint this email without
seeking our permission provided: 1) you do not abbreviate, add
to, or change the text in any way; 2) the authorship information
is retained; and 3) www.tymestrust. org is credited as the source.
Jane Colby is Executive Director of The Young ME Sufferers Trust.
She was a Headteacher for nine years, a member of the government
Chief Medical Officer's Working Group on CFS/ME and co-authored
ME/CFS In UK Schools, the largest epidemiological study of ME to
date. She is a member of the National Association of Educational
Inspectors, Advisers and Consultants (now ASPECT), a life member
of the National Association of Head Teachers and a Fellow of the
Royal Society of Arts.
Copyright (c) 2008 The Young ME Sufferers Trust
Monday 23 June 2008
Worcster News
Dear Sir or Madam,
With regard to the recent article in which your paper inadvertently
advertises the Lightning Process as a successful treatment for the
neurological illness, M.E.:
Yes, it is wonderful that some people seem to be miraculously cured
like this by this therapy. However, I really do feel that one has to
start looking closely at what their G.P.'s interpretation of M.E.
actually was. I wonder if this lucky girl actually had been
misdiagnosed and really had C.F.S. or another form of psychosomatic
illness.
I keep thinking of that poor girl,Sophia Mirza, who had M.E. and
sadly died after being sectioned because people were so convinced
that she was NOT in physical distress:
www.sophiaandme. org.uk
and wondering if this interesting therapy your reader has praised
would have cured the inflammation on her spine,which was obviously
causing her so much pain, and the herpes virus that was found after
the post-mortem but which had not been identified prior to death.
I do feel that it is probably worth trying the therapy you have
discussed if one has the extra money and is able to attend a three
day course away from home. Although Cognitive Behavioural Therapy may
work just as well for people who have Chronic Fatigue and it is free
on the NHS.
However, anyone as ill as Sophia Mirza was, who has M.E. (Which is
classified as a neurological illness by the World Health
Organization) , will need treatment aimed at physical symptoms.
There has been a lot of confusion in this country over the difference
between Chronic Fatigue Syndrome and M.E. (Myalgic
Encephalomyelitis) . Sadly, our own medical profession seem unable to
distinguish between them.
It is unfortunate that the treatment your article praises is one of
many alternative treatments which have not been scientifically
proven, are expensive and exploit an area of medical uncertainty.
There is an urgent need in this country for funding into biomedical
research to establish the underlying causes of M.E. so that medical
professionals and patients know what they are dealing with.
Jill Cooper.
With regard to the recent article in which your paper inadvertently
advertises the Lightning Process as a successful treatment for the
neurological illness, M.E.:
Yes, it is wonderful that some people seem to be miraculously cured
like this by this therapy. However, I really do feel that one has to
start looking closely at what their G.P.'s interpretation of M.E.
actually was. I wonder if this lucky girl actually had been
misdiagnosed and really had C.F.S. or another form of psychosomatic
illness.
I keep thinking of that poor girl,Sophia Mirza, who had M.E. and
sadly died after being sectioned because people were so convinced
that she was NOT in physical distress:
www.sophiaandme. org.uk
and wondering if this interesting therapy your reader has praised
would have cured the inflammation on her spine,which was obviously
causing her so much pain, and the herpes virus that was found after
the post-mortem but which had not been identified prior to death.
I do feel that it is probably worth trying the therapy you have
discussed if one has the extra money and is able to attend a three
day course away from home. Although Cognitive Behavioural Therapy may
work just as well for people who have Chronic Fatigue and it is free
on the NHS.
However, anyone as ill as Sophia Mirza was, who has M.E. (Which is
classified as a neurological illness by the World Health
Organization) , will need treatment aimed at physical symptoms.
There has been a lot of confusion in this country over the difference
between Chronic Fatigue Syndrome and M.E. (Myalgic
Encephalomyelitis) . Sadly, our own medical profession seem unable to
distinguish between them.
It is unfortunate that the treatment your article praises is one of
many alternative treatments which have not been scientifically
proven, are expensive and exploit an area of medical uncertainty.
There is an urgent need in this country for funding into biomedical
research to establish the underlying causes of M.E. so that medical
professionals and patients know what they are dealing with.
Jill Cooper.
Worcester News Letters.
Heather Hutber makes some refreshingly honest and accurate comments about the Lightning Process as a treatment for M.E. (Myalgic Encephalomyelitis) but they don't go far enough and there are some other issues, apart from her own daughter, Zoe's, experience with it that need discussing. There's no doubt, as she says, it is a "controversial therapy" but she does not "completely understand why"; nobody does, not even the people who practise it.
The Lightning Process has not been independently, scientifically, tested but relies on subjective testimonials. It is not approved by any orthodox medical organisation. It is practised by a disparate group of people with diverse and vague qualifications, with no recognised universal standards. The trainers, who are franchised by Lightning Process inventor Phil Parker, in return for a training fee and a percentage of the take, appear to be sworn to secrecy about what will happen in a session, until the patient parts with the money. A session costs as much per hour as some people with M.E., on benefits, have to live on for a week. The final total figure, most often quoted, is £560 but we have heard of people who have paid much larger sums. The Lightning Process relies on faith and on cooperation by the patient so, if the patient says they improved, it is possible to claim success for the Lightning Process but, if the patient complains they are no better, it is possible to say that they were uncooperative or somehow not ready for it.
The title of the article, which appears to suggest that M.E. sufferer Zoe was "cured" (Parents speak of joy as Zoe's illness is cured, Worcester News, 21 June 2008) is not only inaccurate, in claiming a cure, since "by her own admission Zoe is still not fully back to her old self and currently has about 80-90% of the energy she had before", it gives the impression that this degree of recovery occurred not only after having the Lightning Process but because of it. A more plausible explanation of Zoe's improvement is that it has been brought about, over time, by pacing the energy she has and by assistance with a home tutor.
It isn't only with the Lightning Process, or other alternative therapies, that the onus is on the inventors or advocates to prove that they work and do no harm but also the orthodox treatments of Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET). Where there is no evidence of lasting benefit, without remission, or that nobody will be worse after treatment, it would be sensible to decline it until the reliable research work has been done.
I sincerely hope that Zoe gets better still and stays better but I wish the same for everyone with M.E. and for nobody to suffer due to ignorance. Zoe's Mum might be thinking differently about the Lightning Process if they had not "got their daughter back", which happens to some you won't be reading about.
Lightning Process advocates appear to be equally secretive about the success rate, without relapse, compared with those who remain so ill with M.E. that they may be discounted from the statistics. This tends to offer a false hope which, in most cases, will not be realised.
Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org
Parents speak of joy as Zoe's illness is cured (Worcester News, 21 June 2008)
http://www.mefreeforall.org/M-E-in-the-News.107.0.html
The Lightning Process has not been independently, scientifically, tested but relies on subjective testimonials. It is not approved by any orthodox medical organisation. It is practised by a disparate group of people with diverse and vague qualifications, with no recognised universal standards. The trainers, who are franchised by Lightning Process inventor Phil Parker, in return for a training fee and a percentage of the take, appear to be sworn to secrecy about what will happen in a session, until the patient parts with the money. A session costs as much per hour as some people with M.E., on benefits, have to live on for a week. The final total figure, most often quoted, is £560 but we have heard of people who have paid much larger sums. The Lightning Process relies on faith and on cooperation by the patient so, if the patient says they improved, it is possible to claim success for the Lightning Process but, if the patient complains they are no better, it is possible to say that they were uncooperative or somehow not ready for it.
The title of the article, which appears to suggest that M.E. sufferer Zoe was "cured" (Parents speak of joy as Zoe's illness is cured, Worcester News, 21 June 2008) is not only inaccurate, in claiming a cure, since "by her own admission Zoe is still not fully back to her old self and currently has about 80-90% of the energy she had before", it gives the impression that this degree of recovery occurred not only after having the Lightning Process but because of it. A more plausible explanation of Zoe's improvement is that it has been brought about, over time, by pacing the energy she has and by assistance with a home tutor.
It isn't only with the Lightning Process, or other alternative therapies, that the onus is on the inventors or advocates to prove that they work and do no harm but also the orthodox treatments of Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET). Where there is no evidence of lasting benefit, without remission, or that nobody will be worse after treatment, it would be sensible to decline it until the reliable research work has been done.
I sincerely hope that Zoe gets better still and stays better but I wish the same for everyone with M.E. and for nobody to suffer due to ignorance. Zoe's Mum might be thinking differently about the Lightning Process if they had not "got their daughter back", which happens to some you won't be reading about.
Lightning Process advocates appear to be equally secretive about the success rate, without relapse, compared with those who remain so ill with M.E. that they may be discounted from the statistics. This tends to offer a false hope which, in most cases, will not be realised.
Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org
Parents speak of joy as Zoe's illness is cured (Worcester News, 21 June 2008)
http://www.mefreeforall.org/M-E-in-the-News.107.0.html
Thursday 19 June 2008
Radio Norfolk
Following up on the recent High court decision to grant a judicial review of the NICE Guidelines into ME -
Jamie Beagent (solicitor) and (separately) Ian Gibson MP et al were interviewed this morning on: BBC Radio Norfolk: 'Breakfast with Stephen Bumfrey'. Programme: 7am to 10am, Thursday 19 June 2008.
Listen again will be available today at:
http://www.bbc.co.uk/norfolk/local_r...
Click on listen again and then select Breakfast with Bumfrey
Jamie Beagent and Ian Gibson are 20 minutes into the show
48 minutes in a call from Sue, son sufferer of ME
2hr 25 minutes in BRAME -CBT/GET, caller with ME
2hr 47 minutes in from Roger talking about his charity A Place for ME, can be contacted at aplaceforme.info
Jamie Beagent (solicitor) and (separately) Ian Gibson MP et al were interviewed this morning on: BBC Radio Norfolk: 'Breakfast with Stephen Bumfrey'. Programme: 7am to 10am, Thursday 19 June 2008.
Listen again will be available today at:
http://www.bbc.co.uk/norfolk/local_r...
Click on listen again and then select Breakfast with Bumfrey
Jamie Beagent and Ian Gibson are 20 minutes into the show
48 minutes in a call from Sue, son sufferer of ME
2hr 25 minutes in BRAME -CBT/GET, caller with ME
2hr 47 minutes in from Roger talking about his charity A Place for ME, can be contacted at aplaceforme.info
Tuesday 17 June 2008
Judicial review of NICE Guideline to go ahead
Judicial review of NICE Guideline to go ahead
STOP PRESS - Mr Justice Cranston ruled in the High Court this afternoon that
the application for a judicial review of the NICE clinical guideline into
ME/CFS should go forward. The full review, which is expected to last two
days, will take place sometime in the autumn. The ME Association will post a
report into today's exploratory hearing tomorrow morning.
This press release was issued a few days ago by Leigh Day & Co, Solicitors
High Court hearing on NICE Judicial Review to take place on June 17th 2008
Patients of a devastating illness, Myalgic Encephalomyelitis (M.E.) have
today welcomed the news that there is to be a hearing in the High Court in
London on the 17th June to decide whether or not to grant permission for a
Judicial Review of NICE guidelines on the illness which is sometimes
referred to as CFS/ME.
NICE issued their Guideline for doctors in August last year amid protests
from patients and medical researchers that they had not followed correct
protocols in producing the Guideline. Patient groups fear that some patients
could be pressured into accepting treatments which at best may be useless
and at worst could cause real harm.
The hearing will take place in the High Court at the Royal Courts of Justice
on the Strand on 17 June 2008. The hearing is listed to last for half a day
and Court will hear legal argument from lawyers representing two ME
sufferers as well lawyers for NICE. The precise time and location of the
Court room will be published on HM
STOP PRESS - Mr Justice Cranston ruled in the High Court this afternoon that
the application for a judicial review of the NICE clinical guideline into
ME/CFS should go forward. The full review, which is expected to last two
days, will take place sometime in the autumn. The ME Association will post a
report into today's exploratory hearing tomorrow morning.
This press release was issued a few days ago by Leigh Day & Co, Solicitors
High Court hearing on NICE Judicial Review to take place on June 17th 2008
Patients of a devastating illness, Myalgic Encephalomyelitis (M.E.) have
today welcomed the news that there is to be a hearing in the High Court in
London on the 17th June to decide whether or not to grant permission for a
Judicial Review of NICE guidelines on the illness which is sometimes
referred to as CFS/ME.
NICE issued their Guideline for doctors in August last year amid protests
from patients and medical researchers that they had not followed correct
protocols in producing the Guideline. Patient groups fear that some patients
could be pressured into accepting treatments which at best may be useless
and at worst could cause real harm.
The hearing will take place in the High Court at the Royal Courts of Justice
on the Strand on 17 June 2008. The hearing is listed to last for half a day
and Court will hear legal argument from lawyers representing two ME
sufferers as well lawyers for NICE. The precise time and location of the
Court room will be published on HM
Friday 13 June 2008
Dr Enlander gives ME sufferers hope
Well done to Dr Enlander in speaking out for the ME community at the way ME sufferers are being treated here in Belfast and highlighting the true facts on ME.
Dr Derek Enlander who came to Belfast on May 4th and seen my son David.
Dr Enlander was a not only a gentleman but very understanding to David, and for the first time for David he did not have to repeatedly go over all his symptoms of ME.
As for continuing his care and supervising his patients from 3000 miles away, I have to say I have more contact with Dr Enlander over the Past 4 weeks than I have had from consultants and GPS here.
It is having the reassurance that when you face a new problem that Dr Enlander has contacted me in less than 24hrs fro 3000 miles away, and given me advice (sometimes as a mother and carer that is all I need).
As will his regime conflict with patient’s current NHS treatment, what treaments are they ,pills to help cope with the symptoms, therapies like graded exercise and cognitive behaviour therapy (come on now) when both these therapy’s have had very little benefit to ME sufferers.
Sophia Mirza’s refused the treatment of the CBT/GET clinic and was put into a mental institution. It took an appeal to a special tribunal to get her out.
Yes, I know, this sounds too horrible to be true. But this is happening in the UK today and forms the force behind the ‘controversy’ of ‘physical’ versus ‘mental’ argument in ME.
Dr Enlander is an ME specialist. Unlike the doctors here in Belfast
who have little or no experience of this condition, so how can they
hope to treat it. He is pursuing a cure for this illness at the
Mount Sinai Hospital in New York, as our Dr. Jonathan Kerr (ex
Belfast) at St. George's Hospital in London, and by Dr. Vance Spence
(ex Strabane) at Dundee University.
What hope is there when doctors in the hospital don’t even understand your ME.
In this day and age with all the medical information that is available to doctor, their ignorance still is extremely disheartening.
ME sufferers have had to suffer much more than the disabling symptoms of the illness itself: they also have to put up with the disbelief from the medical profession, and the only thing on offer is Psychiatry which is an insult to my son David and also to the 7000 other ME sufferers in Northern Ireland.
This shows how little people with ME are thought of and how ignorant the
medical profession as a whole is.
We are all in this together - ME sufferers, our treating practitioners, families and carers. Lets not be destructive of each other. As difficult as it is at times, it is time for the ME community to stop being competitive. What we all want is proper care and attitude to all ME sufferers.
It’s 2008 ME sufferers shouldn’t have to put up with 2nd class treatments, what we want is proper funding for proper treatments.
I think the DOH need to take a proper look at the funding for ME.
My priorities with regards to ME:
> Help my son live day to day and relieve the pain and suffering he
is enduring even as you read this.
> Raise awareness of the neurological disorder ME
> Raise money for Biomedical Research into ME (because the
government won't give any). PLEASE HELP!!!
Dr Derek Enlander who came to Belfast on May 4th and seen my son David.
Dr Enlander was a not only a gentleman but very understanding to David, and for the first time for David he did not have to repeatedly go over all his symptoms of ME.
As for continuing his care and supervising his patients from 3000 miles away, I have to say I have more contact with Dr Enlander over the Past 4 weeks than I have had from consultants and GPS here.
It is having the reassurance that when you face a new problem that Dr Enlander has contacted me in less than 24hrs fro 3000 miles away, and given me advice (sometimes as a mother and carer that is all I need).
As will his regime conflict with patient’s current NHS treatment, what treaments are they ,pills to help cope with the symptoms, therapies like graded exercise and cognitive behaviour therapy (come on now) when both these therapy’s have had very little benefit to ME sufferers.
Sophia Mirza’s refused the treatment of the CBT/GET clinic and was put into a mental institution. It took an appeal to a special tribunal to get her out.
Yes, I know, this sounds too horrible to be true. But this is happening in the UK today and forms the force behind the ‘controversy’ of ‘physical’ versus ‘mental’ argument in ME.
Dr Enlander is an ME specialist. Unlike the doctors here in Belfast
who have little or no experience of this condition, so how can they
hope to treat it. He is pursuing a cure for this illness at the
Mount Sinai Hospital in New York, as our Dr. Jonathan Kerr (ex
Belfast) at St. George's Hospital in London, and by Dr. Vance Spence
(ex Strabane) at Dundee University.
What hope is there when doctors in the hospital don’t even understand your ME.
In this day and age with all the medical information that is available to doctor, their ignorance still is extremely disheartening.
ME sufferers have had to suffer much more than the disabling symptoms of the illness itself: they also have to put up with the disbelief from the medical profession, and the only thing on offer is Psychiatry which is an insult to my son David and also to the 7000 other ME sufferers in Northern Ireland.
This shows how little people with ME are thought of and how ignorant the
medical profession as a whole is.
We are all in this together - ME sufferers, our treating practitioners, families and carers. Lets not be destructive of each other. As difficult as it is at times, it is time for the ME community to stop being competitive. What we all want is proper care and attitude to all ME sufferers.
It’s 2008 ME sufferers shouldn’t have to put up with 2nd class treatments, what we want is proper funding for proper treatments.
I think the DOH need to take a proper look at the funding for ME.
My priorities with regards to ME:
> Help my son live day to day and relieve the pain and suffering he
is enduring even as you read this.
> Raise awareness of the neurological disorder ME
> Raise money for Biomedical Research into ME (because the
government won't give any). PLEASE HELP!!!
Parent of a Son with ME
Please forward/repost.
Letter sent to a senior Parliamentary Aide by the parents of a son
with ME (scanned, so there may be minor errors - Doug)
20th May 2008
Dear Aide
You will notice there is no return address on this letter - the reason
- we no longer wish to be "brushed –aside" with the Pro-forma replies,
which we usually receive in response to our heart-breaking pleas.
Secondly, we also realise the PM will never see this letter, but again
having now experienced the insipid and ineffective replies to our
requests this past 8 years, we're now hoping and praying that by HIS
not seeing and indeed not listening to the electorate - a DOWNFALL
will ensue, and thankfully it would appear this is beginning to take
place.
THIS is our final letter to this Uncaring and Inhumane government and
this letter is perhaps as much a `healing' exercise for ourselves (if
that's at all possible given our tragic circumstances) as it is for
anything else.
As a family of Life Long Labour supporters, indeed supporters of
labour since it's conception, our family - and as many friends as we
can muster and bring on board - will no longer support this party
which so easily Disregards and Distorts TRUTH.
When first elected back into power all those years ago, we had HOPE,
again, and we were holding our breath waiting on the news we longed to
hear, that this so-called party of the people, would take care of
those in most need - people who were not receiving the JUSTICE they
were entitled to, from their then elected representatives.
Our hopes were crushed, however, - almost instantly - when we heard
former party rhetoric spewing from the mouths of our new labour
leaders, when it came to RECOGNISING AND FUNDING BIOMEDICAL RESEARCH
INTO THE MULTI – SYSTEM, ORGANIC, DYSFUNCTION DISEASE— MYALGIC
ENCEPHALOMYELITIS ( M.E.).
Our hearts sank and were crushed, when we realised that this new
labour leadership was also going to ignore the now 3000 – ( yes -
Three Thousand plus) GLOBAL Biomedical Research Studies, which PROVE
this diseases' ORGANIC basis.
Indeed, this new labour government would continue to brutally and
corruptly insist that that this bonafide neurological disease was
simply a "psychological tiredness" and all that would be required
would he some positive thinking (C.BT. - cognitive behaviour therapy).
----- HOW DARE YOU ------
To ignore Truth and to cease to recognise it, encourages a Corrupt
Ideology.
It's a sad thing to have to write, but it would appear that the only
thing that would get through to you and your leaders, is for the
latter to fall victim to their own success - to be struck down with
this life-stopping physical illness; - to lie bed-bound for decades
cruelly abandoned and duplicitously ignored by a government who really
don't give a damn.
They haven't as much as carried out the basic studies of the diseases
epidemiology, aetiology or pathogenesis.
We have witnessed our once healthy, vibrant, life-loving and
hard-working son CRUSHED by this now proven killer disease, his
distress tangible and heartbreaking for us, his parents, who cannot
access the biomedical research required to help treat and improve his
quality of life.
WHY? because this government continues to perpetuate his suffering,
through their shameful and cruel lies -- lies necessary to ENDORSE
the Wessley School of psychiatrists who find it so easy, to ignore
* Truth
* Scientific Biomedical Evidence
* The W.HO.'s neurological classification of the disease – while they
subsume this genuinely organic disorder under the title of a
psychiatric illness.
This government has allowed this now proven physical disease to he
"lumped – in" with `fatigue' conditions and `somatoform disorders,
none of which vaguely resemble the cellular, metabolic and acquired
central nervous system dysfunction, that is true Myalgic
Enccphalomyelitis.
It simply beggars belief, in a" democratic" country.
What has happened to Truth ?
What has happened to this government's duty of care to our son?
Who are you people?
Our son is severely affected by M.E.: he exists in a type of
"living-death" state: he is not able to carry out basic bodily
functions, by himself. Even our doctors are frustrated as they try to
treat "an unknown". As growing numbers of our citizens fall victim
to this very serious condition - many children included - the disease,
if severe, reduces "activity" to basic survival needs and has a
sickness impact profile (S.I.P.) MORE EXTREME THAN THAT FOUND
END-STAGE RENAL DISEASE AND HEART DISEASE.
This government brutality and betrayal of it's citizen's trust - has
no bounds.
The number of patients suffering from Myalgic Encephalomyelitis across
Britain, is increasing annually. It is estimated there are now 1/4 of
a million - and counting - thankfully not all as severely affected as
our son and the numbers affected, far out strip numbers for example of
M.S. sufferers.
Yet still this cruel government, maintains it's corrupt stance in it's
concealment of the true facts.
As we write this final letter to you, the M.E. community around the
UK, including the families and friends of the quarter million
patients — a significant number of votes, you'll agree 1/4 million +
…. ? - are being urged to let their disapproval of the duplicitous
behaviour of this government towards the M.E. patient and the
scientific proof of their illness' organic basis, be felt at the
ballot box.
A change at the top surely couldn't be any worse. As parents whose
pleas were ignored, we hope and pray we won't have to wait the two years.
A family of a very Physically ill son, coping alone , who have been
abandoned and treated feloniously by the very party our great great
grandparents, great grandparents, grandparents and parents helped to
form, run, and at one time vote in favour of……. no more.
PS. Aide—
Best be careful, you don't fall victim to the multi-system organic
disease Myalgic Encephalomyelitis - but then again, how will you know
how, where, who, what - to avoid!
A VICTIM OF YOUR OWN Party's SUCCESS ? BE CAREFUL I WOULDN'T WISH OUR
SON'S SYMPTOMS AND NON-EXISTENT QUALITY OF LIFE ON ANYONE — EVEN ON
THOSE WHO HAVE PERPETUATED IT.
But we do hope you and your bosses sleep well, for the time you have
left in this world---eternity is a long time to shoulder the magnitude
of human suffering you have caused and permitted to flourish, in those
who have been struck down by neurological Myalgic Encephalomyelitis,
while you've been in power.
Letter sent to a senior Parliamentary Aide by the parents of a son
with ME (scanned, so there may be minor errors - Doug)
20th May 2008
Dear Aide
You will notice there is no return address on this letter - the reason
- we no longer wish to be "brushed –aside" with the Pro-forma replies,
which we usually receive in response to our heart-breaking pleas.
Secondly, we also realise the PM will never see this letter, but again
having now experienced the insipid and ineffective replies to our
requests this past 8 years, we're now hoping and praying that by HIS
not seeing and indeed not listening to the electorate - a DOWNFALL
will ensue, and thankfully it would appear this is beginning to take
place.
THIS is our final letter to this Uncaring and Inhumane government and
this letter is perhaps as much a `healing' exercise for ourselves (if
that's at all possible given our tragic circumstances) as it is for
anything else.
As a family of Life Long Labour supporters, indeed supporters of
labour since it's conception, our family - and as many friends as we
can muster and bring on board - will no longer support this party
which so easily Disregards and Distorts TRUTH.
When first elected back into power all those years ago, we had HOPE,
again, and we were holding our breath waiting on the news we longed to
hear, that this so-called party of the people, would take care of
those in most need - people who were not receiving the JUSTICE they
were entitled to, from their then elected representatives.
Our hopes were crushed, however, - almost instantly - when we heard
former party rhetoric spewing from the mouths of our new labour
leaders, when it came to RECOGNISING AND FUNDING BIOMEDICAL RESEARCH
INTO THE MULTI – SYSTEM, ORGANIC, DYSFUNCTION DISEASE— MYALGIC
ENCEPHALOMYELITIS ( M.E.).
Our hearts sank and were crushed, when we realised that this new
labour leadership was also going to ignore the now 3000 – ( yes -
Three Thousand plus) GLOBAL Biomedical Research Studies, which PROVE
this diseases' ORGANIC basis.
Indeed, this new labour government would continue to brutally and
corruptly insist that that this bonafide neurological disease was
simply a "psychological tiredness" and all that would be required
would he some positive thinking (C.BT. - cognitive behaviour therapy).
----- HOW DARE YOU ------
To ignore Truth and to cease to recognise it, encourages a Corrupt
Ideology.
It's a sad thing to have to write, but it would appear that the only
thing that would get through to you and your leaders, is for the
latter to fall victim to their own success - to be struck down with
this life-stopping physical illness; - to lie bed-bound for decades
cruelly abandoned and duplicitously ignored by a government who really
don't give a damn.
They haven't as much as carried out the basic studies of the diseases
epidemiology, aetiology or pathogenesis.
We have witnessed our once healthy, vibrant, life-loving and
hard-working son CRUSHED by this now proven killer disease, his
distress tangible and heartbreaking for us, his parents, who cannot
access the biomedical research required to help treat and improve his
quality of life.
WHY? because this government continues to perpetuate his suffering,
through their shameful and cruel lies -- lies necessary to ENDORSE
the Wessley School of psychiatrists who find it so easy, to ignore
* Truth
* Scientific Biomedical Evidence
* The W.HO.'s neurological classification of the disease – while they
subsume this genuinely organic disorder under the title of a
psychiatric illness.
This government has allowed this now proven physical disease to he
"lumped – in" with `fatigue' conditions and `somatoform disorders,
none of which vaguely resemble the cellular, metabolic and acquired
central nervous system dysfunction, that is true Myalgic
Enccphalomyelitis.
It simply beggars belief, in a" democratic" country.
What has happened to Truth ?
What has happened to this government's duty of care to our son?
Who are you people?
Our son is severely affected by M.E.: he exists in a type of
"living-death" state: he is not able to carry out basic bodily
functions, by himself. Even our doctors are frustrated as they try to
treat "an unknown". As growing numbers of our citizens fall victim
to this very serious condition - many children included - the disease,
if severe, reduces "activity" to basic survival needs and has a
sickness impact profile (S.I.P.) MORE EXTREME THAN THAT FOUND
END-STAGE RENAL DISEASE AND HEART DISEASE.
This government brutality and betrayal of it's citizen's trust - has
no bounds.
The number of patients suffering from Myalgic Encephalomyelitis across
Britain, is increasing annually. It is estimated there are now 1/4 of
a million - and counting - thankfully not all as severely affected as
our son and the numbers affected, far out strip numbers for example of
M.S. sufferers.
Yet still this cruel government, maintains it's corrupt stance in it's
concealment of the true facts.
As we write this final letter to you, the M.E. community around the
UK, including the families and friends of the quarter million
patients — a significant number of votes, you'll agree 1/4 million +
…. ? - are being urged to let their disapproval of the duplicitous
behaviour of this government towards the M.E. patient and the
scientific proof of their illness' organic basis, be felt at the
ballot box.
A change at the top surely couldn't be any worse. As parents whose
pleas were ignored, we hope and pray we won't have to wait the two years.
A family of a very Physically ill son, coping alone , who have been
abandoned and treated feloniously by the very party our great great
grandparents, great grandparents, grandparents and parents helped to
form, run, and at one time vote in favour of……. no more.
PS. Aide—
Best be careful, you don't fall victim to the multi-system organic
disease Myalgic Encephalomyelitis - but then again, how will you know
how, where, who, what - to avoid!
A VICTIM OF YOUR OWN Party's SUCCESS ? BE CAREFUL I WOULDN'T WISH OUR
SON'S SYMPTOMS AND NON-EXISTENT QUALITY OF LIFE ON ANYONE — EVEN ON
THOSE WHO HAVE PERPETUATED IT.
But we do hope you and your bosses sleep well, for the time you have
left in this world---eternity is a long time to shoulder the magnitude
of human suffering you have caused and permitted to flourish, in those
who have been struck down by neurological Myalgic Encephalomyelitis,
while you've been in power.
Tuesday 10 June 2008
Fundraiser in aid of MERUK
Hi All,
Just to let you know that a fundraiser in aid of MERUK is being held in
Brighton on June 25th. The venue is the Joogleberry Playhouse
(http://www.jooglebe rry.com/main_ news.htm) 14 – 17 Manchester Street, Tel:
01273 687171.
The entrance fee is £6 and all profits will go MERUK. Roisin Mirza whose
sister, Sophia, died so tragically young of M.E. is the compere for the
stand-up comedy night.
Please encourage anyone you know in the area to support this worthwhile
event.
Just to let you know that a fundraiser in aid of MERUK is being held in
Brighton on June 25th. The venue is the Joogleberry Playhouse
(http://www.jooglebe rry.com/main_ news.htm) 14 – 17 Manchester Street, Tel:
01273 687171.
The entrance fee is £6 and all profits will go MERUK. Roisin Mirza whose
sister, Sophia, died so tragically young of M.E. is the compere for the
stand-up comedy night.
Please encourage anyone you know in the area to support this worthwhile
event.
Sunday 8 June 2008
E-Petition
E-Petition
Please sign the petition below by going to:
http://petitions.pm.gov.uk/noreservations/
We the undersigned petition the Prime Minister to ratify the UN Convention on the Rights of Persons with Disabilities in full, without reservation or limitation, by December 2008.
The Convention is the first international treaty in history to create a specific legal framework to protect the human rights of disabled people across the globe and to recognise that disabled and non-disabled people share a common humanity. 20 countries need to ratify the Convention before it becomes legally binding. To date only 17 have done so. The UK is not among them. The UK signed the Convention in March 2007. Since then 2,000 people have signed a petition on this site calling on the Government to ratify it without delay. In response to pressure from campaigners the UK has pledged to ratify the Convention by the end of 2008. However, the Convention Campaign Coalition (CCC) is increasingly concerned that the Government might try to reserve, or opt out of, certain Convention rights.Reserving against certain Convention articles means that some parts of the Convention would not be legally binding in the UK. Human Rights are inalienable and universal. If the UK is truly committed to disabled people’s human rights it cannot pick and choose which Convention rights it is willing to support.
Please sign the petition below by going to:
http://petitions.pm.gov.uk/noreservations/
Please sign the petition below by going to:
http://petitions.pm.gov.uk/noreservations/
We the undersigned petition the Prime Minister to ratify the UN Convention on the Rights of Persons with Disabilities in full, without reservation or limitation, by December 2008.
The Convention is the first international treaty in history to create a specific legal framework to protect the human rights of disabled people across the globe and to recognise that disabled and non-disabled people share a common humanity. 20 countries need to ratify the Convention before it becomes legally binding. To date only 17 have done so. The UK is not among them. The UK signed the Convention in March 2007. Since then 2,000 people have signed a petition on this site calling on the Government to ratify it without delay. In response to pressure from campaigners the UK has pledged to ratify the Convention by the end of 2008. However, the Convention Campaign Coalition (CCC) is increasingly concerned that the Government might try to reserve, or opt out of, certain Convention rights.Reserving against certain Convention articles means that some parts of the Convention would not be legally binding in the UK. Human Rights are inalienable and universal. If the UK is truly committed to disabled people’s human rights it cannot pick and choose which Convention rights it is willing to support.
Please sign the petition below by going to:
http://petitions.pm.gov.uk/noreservations/
More on ME
Yes
in this weeks Big Issue in the North there are three letters from ME
Campaigners in reply to Spencer’s comments on behalf of AfME, myself Joy Rees
and Ciaran Farrell. So time to publish them methinks beginning with Ciaran’s,
Joys then finally mine, so here goes:
The
methods and methodology by Action for ME used for their two surveys in 2001 and
2008 were completely different. Avery large percentage of the 2008 survey was
carried out online without any apparent check on who was an AfME member, or ME
sufferer or carer for someone with ME.
AfME
broadened the concepts of psychological graded exercise therapy and cognitive
behavioural therapy and who can assume the role of the “therapist” so it
appears that far more patients were formally treated than was actually the
case., and that the results of this “treatment” were far more successful that
was the case.
AfME
did this in support of their bio psychosocial” illness model of chronic
fatigue, which has large psychological and social components and a small
physical component – the prevailing view in the medical profession.
ME
is not chronic fatigue as ME is defined by the World Health Organisation as a
physical neurological disease and the WHO’s classification system is binding on
the UK government. What we need is a charity that will stand up to the
government for ME sufferers and carers and not work with government against us.
Ciaran
Farrell, ME Sufferer and AfME member, London
Replies,
comments on this or any other letter published on this subject can be sent to:
letters@bigissuenorth.co.uk
The
Big Issue in the North, 10 Swan Street, Manchester, M4 5JN.
in this weeks Big Issue in the North there are three letters from ME
Campaigners in reply to Spencer’s comments on behalf of AfME, myself Joy Rees
and Ciaran Farrell. So time to publish them methinks beginning with Ciaran’s,
Joys then finally mine, so here goes:
The
methods and methodology by Action for ME used for their two surveys in 2001 and
2008 were completely different. Avery large percentage of the 2008 survey was
carried out online without any apparent check on who was an AfME member, or ME
sufferer or carer for someone with ME.
AfME
broadened the concepts of psychological graded exercise therapy and cognitive
behavioural therapy and who can assume the role of the “therapist” so it
appears that far more patients were formally treated than was actually the
case., and that the results of this “treatment” were far more successful that
was the case.
AfME
did this in support of their bio psychosocial” illness model of chronic
fatigue, which has large psychological and social components and a small
physical component – the prevailing view in the medical profession.
ME
is not chronic fatigue as ME is defined by the World Health Organisation as a
physical neurological disease and the WHO’s classification system is binding on
the UK government. What we need is a charity that will stand up to the
government for ME sufferers and carers and not work with government against us.
Ciaran
Farrell, ME Sufferer and AfME member, London
Replies,
comments on this or any other letter published on this subject can be sent to:
letters@bigissuenorth.co.uk
The
Big Issue in the North, 10 Swan Street, Manchester, M4 5JN.
More on ME
Thank
you for printing the quote from Sir Peter Spencer regarding the Action for ME
survey. However this is such old news, we could have told you this, years ago. What
is so sad is all the children and young adults who are suffering from ME.
There
are medical tests that GP’s should be allowed to do to see if enteroviruses are
causing people to be ill but they are constrained. This is not the fault of the
GP’s but our governments, in that education about the aetiology of ME is not
given to doctors. Instead they are educated in the psychology of the disease -
that it is all in the mind and in our belief systems.
Successive
governments have treated other diseases such as asthma, autism, Parkinsons, and
multiple sclerosis in the same way. People like us need your input to educate
the public about what is really going on in the ME world. Please listen to the
little people out there suffering ME and the carers – they know the truth.
Joy
Rees
you for printing the quote from Sir Peter Spencer regarding the Action for ME
survey. However this is such old news, we could have told you this, years ago. What
is so sad is all the children and young adults who are suffering from ME.
There
are medical tests that GP’s should be allowed to do to see if enteroviruses are
causing people to be ill but they are constrained. This is not the fault of the
GP’s but our governments, in that education about the aetiology of ME is not
given to doctors. Instead they are educated in the psychology of the disease -
that it is all in the mind and in our belief systems.
Successive
governments have treated other diseases such as asthma, autism, Parkinsons, and
multiple sclerosis in the same way. People like us need your input to educate
the public about what is really going on in the ME world. Please listen to the
little people out there suffering ME and the carers – they know the truth.
Joy
Rees
More on ME
Yes,
doctors are still unsupportive to people with ME (ME - DOCTORS UNHELPFUL, Issue
722, and subsequent letters). Sadly this is a fact that has changed little over
the years. My daughter was diagnosed by a respected paediatrician and other
doctors in 1993. All she could say was: “I don’t believe in it, there is no
such illness and no information anywhere”. Never was anyone so wrong as we found
three books about ME in the local library, two of them written by prominent
doctors who suffer from the illness, and visible signs of the debilitation,
with my daughter eventually ending up in a wheelchair.
The doctor also said alternative medicine would not work but it did, up to a
point. My daughter now has limited health – unpredictable like most chronic
illnesses but she is out of the wheelchair.
Yes, it is still disturbing that even six years after the Chief Medical
Officer’s report we still have this ignorance. Equally as disturbing is the
fact that for even longer we have had an All Party Parliamentary Group on ME
and still we are no nearer better facilities or even a cure.
(Meeting after meeting discussing past issues but not moving forward and
ignoring what the sufferers really want).
There have been many initiatives from individuals and small groups, which
sadly were not backed up by those who could have offered their support but did
not wish to take part for fear of causing upset or political reasons.
As a result of this lack of co-operation and willingness there is still the
failure today to recognise and offer support to sufferers and the newly
diagnosed, as there was when my daughter was first diagnosed, (and even well before that. Even the
fact that there are prominent celebrity sufferers has proved to no avail as
they too have been reluctant to speak out has let to he continued ignorance.
It is a sad fact that because the symptoms of ME can mimic other illnesses, and
that there is as yet no specific diagnostic test, ME is an illness that makes
everyone an expert, thus it has been easy to link it with Chronic Fatigue
Syndrome trivialising an illness that has claimed many lives in the past, and
may well claim many more in the future).
ME
really is a serious illness, sadly lacking in leadership, (which shows in the
ME community, which is why every event become just another fiasco).
Trevor
Wainwright
doctors are still unsupportive to people with ME (ME - DOCTORS UNHELPFUL, Issue
722, and subsequent letters). Sadly this is a fact that has changed little over
the years. My daughter was diagnosed by a respected paediatrician and other
doctors in 1993. All she could say was: “I don’t believe in it, there is no
such illness and no information anywhere”. Never was anyone so wrong as we found
three books about ME in the local library, two of them written by prominent
doctors who suffer from the illness, and visible signs of the debilitation,
with my daughter eventually ending up in a wheelchair.
The doctor also said alternative medicine would not work but it did, up to a
point. My daughter now has limited health – unpredictable like most chronic
illnesses but she is out of the wheelchair.
Yes, it is still disturbing that even six years after the Chief Medical
Officer’s report we still have this ignorance. Equally as disturbing is the
fact that for even longer we have had an All Party Parliamentary Group on ME
and still we are no nearer better facilities or even a cure.
(Meeting after meeting discussing past issues but not moving forward and
ignoring what the sufferers really want).
There have been many initiatives from individuals and small groups, which
sadly were not backed up by those who could have offered their support but did
not wish to take part for fear of causing upset or political reasons.
As a result of this lack of co-operation and willingness there is still the
failure today to recognise and offer support to sufferers and the newly
diagnosed, as there was when my daughter was first diagnosed, (and even well before that. Even the
fact that there are prominent celebrity sufferers has proved to no avail as
they too have been reluctant to speak out has let to he continued ignorance.
It is a sad fact that because the symptoms of ME can mimic other illnesses, and
that there is as yet no specific diagnostic test, ME is an illness that makes
everyone an expert, thus it has been easy to link it with Chronic Fatigue
Syndrome trivialising an illness that has claimed many lives in the past, and
may well claim many more in the future).
ME
really is a serious illness, sadly lacking in leadership, (which shows in the
ME community, which is why every event become just another fiasco).
Trevor
Wainwright
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