AfME & AYME Guide for Children with M.E.

[Esther12]

http://www.ayme.org.uk/documents/10228/11022/Your%20child%20and%20M.E..pdf

We are particularly grateful to Dr Esther Crawley, Consultant
Pediatrician, Bath/Bristol CFS/M.E. service, for reviewing the
contents.
Cover images: me

Largely full of waffle and anecdotes but I thought I'd post it in case anyone is interested.

Only really one piece of data, and that's rather misleadingly used:

The PACE trial found that adults with CFS/M.E. who were well enough to
participate in its study (ie. not housebound or bedbound) showed moderate
improvements in fatigue and physical function following 52 weeks of
specialised medical care plus CBT or GET. The proportion of participants rating
themselves as “much” or “very much” better in each case was 41%.

Trivially, it was 40%, not 41%. More importantly, 25% of those receiving just SMC reported feeling "much" or "very much" better - so the addition of CBT or GET to patient's medical care, with a large amount of additional therapist time, led to an additional 15% rating themselves as much or very much better.

A form of pacing known as adaptive pacing therapy (APT), together with CBT
and GET, were studied in a trial of adult patients known as the PACE trial.

All participants received specialised medical care (SMC). Patients receiving one
of the therapies were compared with others who had SMC alone. All saw mild
to moderate improvement over a 52 week period.

That seemed a bit weirdly phrased to me. Not all participants saw mild to moderate improvement, and we didn't have something like an appropriate placebo control that would let us say that the treatments themselves were of real value.

Most private practitioners and complementary therapists are
competent, ethical and caring.

Really? Maybe they just have really low standards.

Complementary treatments are also known as ‘alternative,’ ‘natural’ or ‘holistic.’
Some treatments aim to treat the body and mind as a whole, rather than
focusing on specific areas.
Therapies include: osteopathy, aromatherapy, homeopathy, massage,
reflexology, acupuncture, herbal remedies, relaxation and meditation, gentle
yoga exercises and breathing techniques, to name but a few.

...

Some complementary therapies, such as homeopathy and acupuncture are
practised by medical doctors, and may be available on the NHS. There are NHS
homeopathic hospitals in Bristol, Glasgow, Liverpool and London.

Quackery that, by the standards of AfME, AYME and Esther Crawley, is competent, ethical and caring? I guess that if they do judge themselves by the moral standards of homeopaths, that would explain a lot.

What holds back recovery?

M.E./CFS can be an extremely frustrating illness, particularly as the intensity of
the different symptoms can fluctuate. It is much easier to exacerbate the
symptoms than to relieve them.

Managing M.E./CFS requires patience and self control. Understanding what
makes the condition worse is important for you and your child.
Many factors can hold back recovery:
•

Sleep difficulties
Poor quality sleep and sleep reversal are common in children and are major
factors to be addressed before anything else can be effectively implemented.
•
Overactivity

Doing too much can trigger setbacks and result in the illness persisting. On
good days, your child will naturally want to do more – but do too much and
24 hours or more later, they may find themselves in a relapse from which
recovery will seem painfully slow. This pattern is called ‘boom and bust.’ If it
becomes the norm it can be very distressing and there are strong indications
that this pattern can prolong the illness.

It is important that you and your child get to know their limits and to set
small, incremental, realistic goals for getting better. This may mean that
initially they have to reduce their overall activity levels so that they can
achieve a routine they can sustain. They will achieve more by working within
their limits and increasing activities very gradually, than by pushing the
boundaries all the time.

Mood problems
Depression and anxiety reduce a person’s mental and physical ability to cope
with any long-term condition, so it is vital these are addressed. See p 28.
•
Inactivity
In the early stages of the illness in particular, or during a relapse, adequate
rest is necessary and helpful. It is important to think about the quality of your
child’s rest, not just the quantity. See the information on pacing on p 17.
However, while rest is very important, doing too little or being totally inactive
can be harmful. Prolonged inactivity can cause muscle wasting and
weakness. Some gentle activity is important.

Is that it? No 'we don't know what holds back recovery, as we don't know what causes the illness'?

There have been no published randomised controlled trials of GAT. In Action
for M.E.’s 2010 survey of adults who have tried physical rehabilitation therapies,
39% reported an improvement after GAT, while 26% said that they were worse.

I've just quoted that because it's the only other bit of data provided. The novelty of having them refer to some evidence made it jump out to me.

Also, I thought I'd compare the descriptions of CBT and GET given in the PACE trial to those given in this document, as to me the AfME/AYME document seems more like a sales pitch than something intended to educate and allow patients to make informed decisions about their own care.

CBT was done on the basis of the fear avoidance theory of chronic fatigue syndrome. This theory regards CFS as being reversible and that cognitive responses (fear of engaging in activity) and behavioural responses (avoidance of activity) are linked and interact with physiological processes to perpetuate fatigue. The aim of treatment was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant’s symptoms and disability.

...

Graded exercise therapy (GET) was done on the basis of deconditioning and exercise intolerance theories of chronic fatigue syndrome. These theories assume that CFS is perpetuated by reversible physiological changes of deconditioning and avoidance of activity; these changes result in the deconditioning being maintained and an increased perception of effort during exertion and increased symptoms after unaccustomed activity, leading to further inactivity. The aim of treatment was to help the participant gradually return to appropriate physical activities, reverse the deconditioning, and thereby reduce fatigue and disability.

Cognitive behavioural therapy

CBT is used to support people through a variety of chronic illnesses, helping
them to adjust to some of the consequences of being unwell.

It can help people to identify, understand and modify any views and behaviours
which impact on their illness eg. a tendency to overdo it, or being unable to say
‘no.’ Its use does not imply that the cause of the illness is psychological.

CBT can help your child to find ways to cope with issues such as frustration,
anxiety, panic and depression, to help them feel more in control of the illness
rather than controlled by it.

It can also help with practical issues such as:
•
managing energy and activity
•
setting up a sleep routine
•
dealing with reactions or attitudes to M.E./CFS that can slow recovery
•
goal setting
•
psychological support.

CBT can be used one to one, in a group or in a family setting. For CBT to be
effective the therapist should have a sound knowledge of M.E./CFS, be
appropriately trained and be able to work with you in a collaborative and
flexible way.


Graded exercise therapy

The National Institute for Health and Clinical Excellence (NICE) defines GET as:

“An evidence-based approach to CFS/M.E. that involves physical assessment,
mutually negotiated goal-setting and education.”
It says: “The first step is to set a sustainable baseline of physical activity, then
the duration of the activity is gradually increased in a planned way that is
tailored to the person.

“This is followed by an increase in intensity, when the person is able, taking into
account their preferences and objectives, current activity and sleep patterns,
setbacks/relapses and emotional factors.

“The objective is to improve the person’s CFS/M.E. symptoms and functioning,
aiming towards recovery.”

Some researchers and clinicians believe that inactivity and the resulting loss of
physical strength and fitness (deconditioning) may be a factor for some people
with M.E./CFS. GET seeks to reverse this effect, by focusing on gradual but
progressive increases in aerobic exercise.

Often, for those mildly affected, walking is the chosen exercise, maybe starting
at a few paces or five minutes. For those who are well enough, more traditional
types of exercise such as cycling or swimming can be incorporated.

For children who are severely restricted, GET may involve lifting their heads
from the pillow for a few seconds, progressing slowly over weeks or months to
a longer term goal of supported sitting. Stretching and strengthening stiffened
and weakened muscles may also play a part where appropriate.

When it works, GET can have positive effects on overall fitness, physical
capacity for other activities, sleep, mood, aches and pains, stiffness and general
well-being. GET can also act as a rehabilitative behavioural therapy, by
gradually reintroducing those affected by M.E./CFS to an activity or exercise
that has been avoided, helping to improve confidence.

(I saw this posted on @maxwhd's twitter feed - he retweeted Phil Hammond, who works at Crawley's centre).

 

[Cheshire]

p. 13

beware of any practitioner who tells you that their approach will cure your child – there are no miracle cures.

Ouups, maybe Esther should read more carefully this guide, or they should add Lightening Process is an exception…

 

[Min]

I sincere hope that, rather than compromising their children's health by following unsound advice, parents will instead contact the wonderful, Tymes Trust:

http://www.tymestrust.org/

 

[Ambrosia_angel]

Ayme sadly lies to children straight in the face. I don't really entertain the site anymore. It seems to do very little for actual support of children with face to face social meetings etc unlike other teen charities (tct) or to spread the word about ME. It seems to be very internet focused too. If they got the social aspect right the other stuff would follow but that doesn't seem to happen.

Also most of them are very naive about ME and the way they treat us in the uk which is annoying but understandable.

 

[maryb]

Any study that doesn't include bedbound and housebound patients with ME/ CFS, seriously what is the point of it??????

 

[Wildcat]

.

Esther Crawley is the long term Medical Advisor to AYME. The fact that AYME officially condoned Esther Crawley's Lightning Process SMILE Trial, was a significant factor in the West of England Medical Research Ethics Committee giving the proposed SMILE Trial Medical Ethical Approval (according to the West of England Research Ethics Committee itself).


AFME played the same trick with the PACE Trial.


Those two so-called ME charities actively condoned (and in the case of AFME, contributed to the design of) research Trials that misrepresent ME, that misrepresent the definition of the disease, and thus produced skewed results.

Both charities were named in the original Protocols for the trials (AFME PACE; AYME SMILE).

.
With 'friends' like that, we are sabotaged on a regular basis.


.


.

 

[Wildcat]

.
I have posted this before. The evidence deserves attention, because it could invalidate the SMILE Trial.

The written material from the Lightning Process website that youngsters and their families on the SMILE Trial were asked to read has since been deemed misleading and unlawful by the UK Advertising Standards Authority.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


SMILE Trial Protocol 2010:

Interventions (Page 2):

“In addition to the Specialist Medical Care detailed above, young people and their parents will be asked to read the information about the Lightning Process on the Website….”

.
.
Since Dr Crawley’s SMILE Trial was instigated, and proceeded, the Information on Phil Parker’s Lightning Process Website has been deemed Illegal by the UK Advertising Standards Authority (ASA).
.

Surely that should cast some doubt on the Trial…. Because the material that the youngsters and their parents were told to read, as preparation for taking part in the Trial… was misleading, Illegal….. and gave the youngsters and their families unrealistic expectations of the Lightning Process.

http://www.asa.org.uk/Rulings/Adjudications/2012/8/Phil-Parker-Group-Ltd/SHP_ADJ_158035.aspx


http://www.meassociation.org.uk/2013/03/advertising-codes-breached-in-respect-of-lightning-process-on-phil-parkers-website-27-march-2013/

http://www.asa.org.uk/Rulings/Adjudications/2013/3/Phil-Parker-Group-Ltd/SHP_ADJ_210374.aspx?utm_source=Adestra&utm_medium=email&utm_term&utm_content=Phil+Parker+Group+Ltd&utm_campaign=2012+Wednesday+Rulings

.

.

 

[Min]

.
I have posted this before. The evidence deserves attention, because it could invalidate the SMILE Trial.

The written material from the Lightning Process website that youngsters and their families on the SMILE Trial were asked to read has since been deemed misleading and unlawful by the UK Advertising Standards Authority.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


SMILE Trial Protocol 2010:

Interventions (Page 2):

“In addition to the Specialist Medical Care detailed above, young people and their parents will be asked to read the information about the Lightning Process on the Website….”

.
.
Since Dr Crawley’s SMILE Trial was instigated, and proceeded, the Information on Phil Parker’s Lightning Process Website has been deemed Illegal by the UK Advertising Standards Authority (ASA).
.

Surely that should cast some doubt on the Trial…. Because the material that the youngsters and their parents were told to read, as preparation for taking part in the Trial… was misleading, Illegal….. and gave the youngsters and their families unrealistic expectations of the Lightning Process.

http://www.asa.org.uk/Rulings/Adjudications/2012/8/Phil-Parker-Group-Ltd/SHP_ADJ_158035.aspx


http://www.meassociation.org.uk/2013/03/advertising-codes-breached-in-respect-of-lightning-process-on-phil-parkers-website-27-march-2013/

http://www.asa.org.uk/Rulings/Adjudications/2013/3/Phil-Parker-Group-Ltd/SHP_ADJ_210374.aspx?utm_source=Adestra&utm_medium=email&utm_term&utm_content=Phil+Parker+Group+Ltd&utm_campaign=2012+Wednesday+Rulings

.

.

Thank you for the information. Does anyone know where a formal complaint about this can be lodged, please?

 

[Wildcat]

.
Well Min, we have all been there before.

There is nowhere a formal complaint can be lodged.



We could write direct to Dr Esther Crawley - who will not deem to respond.


We could send the evidence to the West of England Research Ethics Committee - but the Committee will not read our evidence because they are only obliged to accept evidence from the Researcher and the Research Funders......


Which brings us back to the National [Medical] Research Ethics Service (the NRES)....



The NRES were sent very many numerous documents of evidence as to why the Lightning Process SMILE Trial on children should not proceed.

The NRES forwarded the amounts of Evidence to the West of England Research Ethics Committee... who considered it... and still gave Dr Esther Crawley the go ahead to do the SMILE Trial on children, with Ethical Approval...

So you tell me.....

In addition, those informed patients and carers who sent researched referenced evidence to the NRES re why the Lightning Process SMILE Trial on youngsters should not proceed, have been repeatedly referred to in the International Media as 'harassers' who 'persecute scientists'.


Who knows where any formal complaint could be lodged?


.

 

[Min]

.
Well Min, we have all been there before.

There is nowhere a formal complaint can be lodged.



We could write direct to Dr Esther Crawley - who will not deem to respond.


We could send the evidence to the West of England Research Ethics Committee - but the Committee will not read our evidence because they are only obliged to accept evidence from the Researcher and the Research Funders......


Which brings us back to the National [Medical] Research Ethics Service (the NRES)....



The NRES were sent very many numerous documents of evidence as to why the Lightning Process SMILE Trial on children should not proceed.

The NRES forwarded the amounts of Evidence to the West of England Research Ethics Committee... who considered it... and still gave Dr Esther Crawley the go ahead to do the SMILE Trial on children, with Ethical Approval...

So you tell me.....

In addition, those informed patients and carers who sent researched referenced evidence to the NRES re why the Lightning Process SMILE Trial on youngsters should not proceed, have been repeatedly referred to in the International Media as 'harassers' who 'persecute scientists'.


Who knows where any formal complaint could be lodged?


.

So the whole thing is stitched up so tight that it is impossible to complain, and any reasonable concern expressed is considered harassment?

 

[Min]

...