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