AYME; Craziness

The average ME sufferer might be forgiven for thinking that AYME (Association of young people with ME) seem to be living on a different planet to the rest of the ME community if they'd read their original statement on the PACE trial

'"AYME welcomes the findings of the PACE trial, the largest ever study of ME/CFS treatments. We hope it begins to increase patient confidence in GET and CBT when delivered by staff who are trained and experienced in dealing with the complexities of this condition. The study now needs to be replicated in children, and there is an urgent need for studies on the severely affected, who clearly cannot attend hospital. PACE assessed the safety and effectiveness of four separate treatments over five years with 640 ME/CFS patients from England and Scotland and found that graded exercise therapy and cognitive behavioural therapy were the most effective treatments for ME/CFS. AYME's Chief Executive Mary-Jane Willows said: "These treatments should be made available to all patients who are able to attend hospital and must be delivered by professionals appropriately skilled and qualified in managing ME/CFS. The crime is that only 25 per cent of children in England alone can access a specialist service, and these are now under serious threat of being cut, if not closed. Unless we fight for these services the results of the PACE trial will be meaningless." “Now is the time for all charities and patients to fight together. We must save existing services and campaign for specialist ME/CFS services across the UK and outreach services for the severely affected.”
This was posted on the 18th of Feb 2011.

There was major outrage amongst their members, most of whom had found CBT & GET ineffective at best and harmful at worst. A thread was started on their message board by a member calling for a boycott of the charity and many dissapointed messages were posted by others. However Mary Jane Willow insisted on defending their statement.

On the 22nd their statement was changed to this;

 "AYME supports any well conducted study that aims to help us understand more about possible treatment options. The findings in this study may not be true in children or young people under 18. There is a need for more research into effective treatments for children and young people and AYME is campaigning for this. Currently 75% of children and young people in the UK do not have access to any ME/CFS specialist medical treatment. AYME is fighting to save these existing services, and for outreach services for the severely affected."
I used to have access to a very helpful outreach service but since 2007 they haven't had a consultant. My parents sorely miss the support of one though I'm not so bothered

I'm worried by how the PACE trial will inform future treatment guidelines. Niether CBT, nor GET are strictly treatments; they don't improve ME sufferers physical health in the slightest. CBT might be helpful in a few cases where sufferers get 'stuck', but I regard GET as pratically a dangerous treatment for ME. It is a very strange recommended treatment for a condition that causes terrible post-exertional fatuige and cardiac abnormalities. (Being unable to raise your heart beat during exercise). Where does LDN, Infra-red saunas and regular rest periods fit in with those treatments?

A few other things about PACE that annoy me;

1. Sufferers who took part were only seen by a docter 4 times over a 12 month period
2. Only those well enough to attend a specialist clinic, as AYME have proudly admitted only makes up 25% of people, were able to take part. Also anyone with neurological symptoms were not allowed to take part
3. Judging a persons state of health by their mood and how far they can walk in six mins seems rather strange

It is a shame all that public money wasted for nothing.

My Mum is also dissapointed by how AYME has changed. It originally started to give young people with ME a voice in society but now they seem to have got into bed with the idiots

A petition has been set up by a group of people who call themselves 'The CFS resistance' asking AYME to denounce their statement. (Well two petitions actually, one asking them just to denounce what they've said on PACE and another to change their attitudes towards both PACE and SMILE trial but I'll go into more details on the SMILE trial later). I have signed the first, this is what I put;

'I've been badly mentally damaged by therapies similar to GET, CBT and the overwhelming attitude towards ME to the extent I'm afraid to confess to toothache in case it is simply 'all in my mind' and I feel I'm two seperate people.

However I lately found out part of my ME is caused by Mitochondria failure and am now improving, thanks to LDN (low dose naltrexone) and infra-red saunas

I long ago left AYME because I didn't feel they wanted to recognise my ME. I'm still only 19'

I should probably have put 'I long ago left AYME because I felt they failed to recognise my ME' but I was rather tired at the time

Statements on the PACE trials

The two biggest medical trials funded by the MRC atm are the FINE and PACE trials.

According to the website the PACE trial is 'the first 'large-scale trial in the world to test and compare the effectiveness of four of the main treatments currently available for people suffering from chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME)'

These are, also quoted from their website;

'

• Standardised specialist medical care. This is the most common treatment for CFS/ME. Specialist doctors can give an explanation of why participants are ill and general advice about managing the illness. They may also prescribe medicines to help with troublesome symptoms such as insomnia and pain, or advise GPs on what medicine is appropriate. If a participant is randomised to this treatment alone, they are encouraged to use specific self-help management that make most sense to them.   .
• Adaptive pacing therapy. This therapy is about carefully matching activity levels to the amount of energy available. Therapists work with participants in this treatment group to help monitor activity and symptoms, aiming to improve quality of life and create the best conditions for a natural recovery.
• Cognitive behaviour therapy. This therapy is about examining how thoughts, behaviour and CFS/ME symptoms interact with each other. Between therapy sessions, participants in this treatment group are encouraged to try out new ways of coping with their illness.
• Graded exercise therapy. This is about gradually increasing physical activity to improve fitness and get the body used to activity again. A therapist helps participants in this treatment group to work out a basic activity routine and slowly build up the amount of exercise as fitness increases.

I'm dissapointed they're not doing proper biomedical research so they could develop a drug or something. Its very difficult, if not impossible to manage your symptoms using these therapies

Another quote I don't like;

' No responsibility is accepted by the authors for the application of treatments described in these manuals outside of the PACE trial.'

The apparent results;

“We affirm that cognitive behaviour therapy and graded exercise therapy are moderately effective outpatient treatments for chronic fatigue syndrome when added to specialist medical care, as compared with adaptive pacing therapy or specialist medical care alone. Findings from PACE also allow the following interpretations: adaptive pacing therapy added to specialist medical care is no more effective than specialist medical care alone; our findings apply to patients with differently defined chronic fatigue syndrome and myalgic encephalomyelitis (ME) whose main symptom is fatigue; and all four treatments tested are safe.”

In a linked *Comment*, Dr Gijs Bleijenberg, and Dr Hans Knoop, Expert Centre for Chronic Fatigue, Radboud University NijmegenMedical Centre, Netherlands, say: “The central role of cognition in relation to fatigue might explain why graded exercise therapy is effectiveand adaptive pacing therapy is not.” They note that /in adaptive//pacing patients learn to focus on the fatigue in order to stop “in time”, which does not seem to help, while in graded exercise patients learn that they are able to do more than they thought possible

Statement on it from Invest in ME, a support group;

The PACE Trials have recently been published and demonstrate clearly what is wrong with the present way that vested interests have manipulated the establishment view about myalgic encephalomyelitis (ME/CFS) and forced tens of thousands of patients and their families to live in a continual state where no proper research is sanctioned, good science is denied and where pointless and biased studies are funded by a system which denies human rights.

Simple facts:

The Pace Trials cost nearly £5 million pounds of tax payers' money.

Patients were opposed to the trials right from the start due to patient selection criteria - save from two unrepresentative organisations who have taken money from the government in order to accept their policies toward ME.

ME is a distinct neurological illness and has been classified as such since the 1969 by the WHO in ICD10-G93.3. Fatigue Syndrome has its own classification in F48.

It is in none of the patient groups' interest in mixing these patient cohorts and trying to find a one size fits all management technique.

The purpose of any medical research should be the benefit of the patients and the PACE trials do not benefit ME patients but rather known vested interests who control what the media publish and what the Medical Research Council fund in relation to ME/CFS.

In recent years Invest in ME has been contacted more and more by patients or their carers asking for advice as the NICE guidelines recommendation of using CBT and GET has been forced upon them and patients have been bullied into activities beyond their limits.

This has led to some severe consequences such as suicide attempts but parents of children in such cases are often afraid of complaining due to fear of their children being taken into care.

We fear this is going to get worse now after these PACE trial results are being taken at face value.

How ironic it is that the Department of Health and the UK National Blood Services permanently prohibit people with ME/CFS from donating blood - their reasoning being that ME/CFS is a relapsing condition and this was to protect the health of patients. Yet now the message to the healthcare professionals from the PACE trials is that graded excercise and cognitive behaviour therapy are helpful - thus forcing vulnerable and physically ill people to risk further damage to their health.

By any measure the PACE trials are flawed and are not the result of proper research. Using diagnostic criteria which do not define patients with ME/CFS and which exclude people with neurological disorders means that patients participating in these trials were of a heterogeneous variety - thus making the results completely irrelevant.

This nullifies all of this study.

The PACE trials are designed, created and performed by those who view ME/CFS as a consequence of wrong illness beliefs or deconditioning.

The PACE trials are bogus science and have no relevance in the treatment of people suffering from myalgic encephalomyelitis.

All I want is to get better, is that so much to ask?