'I was so exhausted I couldn't move'

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

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

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

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.

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

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.

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