Alleged bias in ME study

[Guest guest]

Reference:

*Treatment is making teenager's ME worse*

See below the #### -line.

~jvr

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From: ME Free For All.org

Alleged bias in M.E. study

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PERMISSION TO FORWARD, REPOST & USE IN

NEWSLETTERS.

I see that there have been a number of intelligent

comments online about Dr Esther Crawley's

allegations of bias in the AfME/AYME survey but the

wider public won't be aware unless you write to the

newspapers in which they appear and that's what

increasing ME Awareness is about.

So far, I have seen it referred to in the Bristol

Evening Post for which the e-mail address is:

epletters@...

but I would suggest that you also write to the Bath

Chronicle: letters@...

which is the (now weekly) newspaper in the town

where she practises and anywhere else it appears.

I think the study does have some flaws but this

seems to be pot calling kettle and while they bicker

they still both advocate greater investment in a

Graded Exercise which this survey finds makes more

than one-third worse.

This is a British study but the people who

recommend this treatment have influence worldwide

so I hope M.E. sufferers from abroad will have their

say too.

Cheers

drjohngreensmith@...

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Letters.

The better time for Dr Esther Crawley to suggest that

a survey, conducted by two M.E. (Myalgic

Encephalomyelitis) organisations, Action for M.E

(AfME) and the Associaton of Young People with M.E.

(AYME), to consider the effects of the treatment

which Dr Crawley administers at a Bath clinic, would

have been before the study commenced, not after it

had been reported.

Dr Crawley leaves us to guess what " issues " the

respondents had with Graded Exercise Treatment

(GET), which caused the results to be biased. It

would be unsurprising if they reported feeling pain; it

would be very worrying if she is suggesting they

were exaggerating or even being untruthful. Nor does

she say what steps she would take to remove any of

the alleged bias of which she complains.

Ironically, there may be greater suspicion of bias

behind the figures which she quotes in defence of

GET. Although it is true that it is in the NICE

(National Institute for Health and Clinical Excellence)

guidelines that planning treatment for M.E sufferers

should be a joint agreement between therapist and

patient and that patients may decline any treatment,

or ask it to be stopped any time they feel the

slightest discomfort, we know, in practise, that

treatment decisions are finalised by the therapist

and patients say different things in different places -

such as having been pushed beyond limits, even

bullied - due to the authority of the therapist and for

fear of upsetting the GP who referred them, even

being dropped from their lists.

Thus, the 85% of patients who say they are " happy "

is likely to be grossly overestimated and the 15% -

whatever they feel or happens to them - grossly

underestimated.

There may be, indeed, be flaws in the AfME/AYME

work - ambiguous questions in the survey; the

indiscriminate sample of M.E. sufferers bundled in

with all patients labelled CFS; unwarranted

assumptions of the success of GET, so far,

unsupported by evidence - which make the published

figure of 34% of patients who are worse after GET to

be quite an underestimate.

While they quarrel amongst themselves they both,

astonishingly, despite these flaws and the concern

they should have for even the lowest estimate of

negative effect, call for even more investment in it

and practitioners to conduct Graded Exercise

Treatment.

By contrast, every other national M.E. charity has

issued a statement expressing some level of

opposition to Graded Exercise Treatment.

ME Free For All. org would like to see specialist

services for M.E. sufferers but believes there never

was solid scientific evidence to go ahead with the

establishment of a national clinical network of

centres (CNCCs) as it is.

There should be a suspension of these treatments,

pending properly validated and reliable biomedical

research into the physical cause of M.E. which

should, in turn, suggest appropriate treatment

towards cure. It is both unscientific and unethical to

continue this way.

Yours sincerely

drjohngreensmith@...

Dr H Greensmith

ME Free For All. org

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Treatment is making teenager's ME worse

(Bristol Evening Post, 16 May 2008)

PERMISSION TO FORWARD, REPOST & USE IN

NEWSLETTERS.

Already a few letters in response to the paper

version, as well as comments online, under this

article (link below my signature) in the Bristol

Evening Post, which confirms that People with ME are

worse after GET (Treatment is making teenager's ME

worse, Bristol Evening Post, 16 May 2008).

The reaction of the survey's compiler and one of the

therapists invite some comment too.

The e-mail address is epletters@...

Cheers

drjohngreensmith@...

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Bristol Evening Post Letters.

Veteran M.E. (Myalgic Encephalomyelitis) sufferers,

including this Research Psychologist, diagnosed 20

years ago, have been warning for years that

well-intentioned advice to exercise has left them

feeling worse, some irrecoverably so, in a wheelchair

or bed bound, from which they never regain their

previous levels. Recent research, some since the

NICE (National Institute for Health and Clinical

Excellence) guidelines of August 2007, which

recommend Graded Exercise Treatment (GET), have

confirmed it.

The principal finding of a survey, by Action for ME

(AfME) and The Association of Young People with

M.E. (AYME), published this M.E. Awareness Week, is

that 34% felt worse after Graded Exercise

Treatment, just as teenage sufferer Helen Wood has

experienced (Treatment is making teenager's ME

worse, Bristol Evening Post, 16 May 2008). It may

turn out that this percentage is quite an

underestimate but even one-third is a cause for

concern about its future.

Astonishingly, Action for ME's response is to call for

greater investment in it and even more therapists.

Every other national M.E. charity has issued a

statement, voicing some degree of opposition to

GET.

ME Free For All. org is appealing for the treatments,

recommended by the NICE guidelines, to be

suspended, pending biomedical research into the

physical cause of M.E. which should, in turn, suggest

appropriate safe treatment towards cure, since no

treatment is better than one (Cognitive Behaviour

Therapy) which has no lasting benefit, without

relapse, or one (Graded Exercise Treatment) that

makes people with M.E. worse. How much more

evidence - and human suffering - is needed?

Yours sincerely

drjohngreensmith@...

Dr H Greensmith

ME Free For All. org

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http://tinyurl.com/3pu2hr

Treatment is making teenager's ME worse

(Bristol Evening Post, 16 May 2008)

A young ME sufferer says a treatment recommended

by the Government makes her feel worse, not better.

Helen Wood, 18, from Thornbury, is not alone. A

survey by Action for ME revealed a third of people

with the condition who had a treatment called

graded exercise therapy, also reported it made them

worse.

ME, also known as chronic fatigue syndrome, causes

a range of symptoms including muscle pain,

tiredness, headaches, sleep disturbances and

difficulties with concentration.

The charity, which released the figures as part of ME

Awareness Week, also said GPs were still largely

unsupportive towards patients who had ME.

Helen was diagnosed with ME in 2005 but is thought

to have had it for at least 10 years.

The condition makes her immune system weak and

vulnerable to infection and she said she was

constantly exhausted and suffered from aches and

pains.

She has not been to school since April 2004 and

despite having home education, has not been able to

finish her GCSEs because of the illness.

She sees a psychologist at Bristol's Frenchay

Hospital and also a dietician, but is rationed to just

one appointment a month with her GP.

Her graded exercise therapy involves her walking up

and down the stairs or getting in and out of the bath

- easy enough for most people but not for Helen.

" I have been told to walk up and down the stairs a

few times a day to get my muscles working but

sometimes it makes me feel bad and sometimes I

feel worse afterwards, " she said.

" I'm not able to do much at all and I feel really achy

all the time and tired, I would really like to go out

more but I just can't manage it. "

She added: " Talking helps the most because I can

get things off my chest.

" But I would like people to understand ME better, I

don't think that doctors do at all because they think

it is all in the mind but it's not, it's a physical thing. "

The National Institute of Clinical Excellence (Nice)

guidelines tell doctors to develop a personal plan for

each of their patients, recommending cognitive

behavioural therapy and graded exercise therapy as

treatments.

Graded exercise therapy encourages patients to

gradually increase physical exercise or daily tasks

irrespective of how they feel.

But while Action for ME accepted the treatment could

help some, it said that 34 per cent of ME patients in

its survey said graded exercise therapy had made

their ME worse.

However Dr Esther Crawley, an ME specialist based

at the Royal National Hospital for Rheumatic

Diseases in Bath and who helped to draw up the Nice

guidelines, dismissed the findings, saying the survey

was unreliable.

" This survey is based on a biased sample of people

who have had an issue with treatment and we

cannot deduce who had graded exercise therapy

delivered by a specialist, as Nice recommends, " she

said.

" Delivered by a specialist, it actually reduces activity

to a stable level and then to a small amount each

day. We have had above 85 per cent of people who

said they have been happy with their treatment.

" We do not say to people they have to have the

therapy, we give them a range of options and they

choose. "