The Status of Myalgic Encephalomyelitis
References for parliamentary debates, articles and reviews of the establishment policies toward ME

From a Patient: To Invest in ME Research

I have been closely following your continuing correspondence in relation to the call for revision of the NICE guidelines.

In particular the removal of CBT/GET.

I have had M.E. for almost four years and am quite severely affected.

I am housebound most of the time and often bedbound.

I was previously a 'high flyer' (my neurologists' words) and a civil servant with a social work background.

Due to my illness I am no longer able to work, and have just been through the very painful process of applying for ill health retirement.

My pension provider (through the (name provided) pension scheme) has a two tier system for pension awards in the circumstance of ill health retirement.

I have undergone five medical assessments during the process and have been assessed as permanently incapacitated in terms of employment.

However, as I have not completed the treatment, as recommended in the NICE guidelines, I cannot obtain the higher rate pension.

The treatment namely being CBT and GET.

I have engaged with the specialist M.E. service in (location provided) but was unable to continue as attending sessions made me more unwell.

I tried CBT through my local mental health service, attending three out of six sessions, this made me more unwell and put me back into bed for weeks.

I am in receipt of the highest rate of both ESA and PIPS.

These were both awarded following the first medical assessment, which I understand is not the position for far too many M.E. sufferers.

I have taken my ill health retirement case to appeal within my pension service.

The position of the original decision not to award me the higher rate pension has been upheld on the grounds that I have not completed CBT and GET.

My pension provider will now escalate my appeal to stage two of the process.

However, the decision makes it clear that, in order to succeed, I need to prove that I have completed CBT and GET.

I am faced with a position that is unfair and takes away any right I have not to undergo treatment that exacerbates my illness.

I have had support from my union (name provided), however they aren't familiar with the fight that M.E. suffers like myself face.

I have previously had a life where i travelled up and down the country for my career, helping to make a difference in the lives of vulnerable children.

I had authority and was very much a professional.

I have always worked within the public sector, both local and central government.

I had a lively social life, always on the go with my partner and family.

Now my life revolves around my bedroom. I rely on pillows, blackout curtains and strong medication to try and control my pain. If I journey out, it is to visit my G.P. which takes around three hours to get me ready for, with lots and lots of assistance from my wife, who is also my carer and carer to our 18 year old disabled son.

I often find it difficult to construct challenges around my illness as I simply can't find the words due to my diminished cognitive functioning.

This is one of the hardest symptoms to deal with. The loss of intellect.

It's in there somewhere, I'm in there somewhere, but I just can't get the words to make sense.

It is imperative that someone listens to our voices and I am so thankful for your determination in challenging the medical profession around our treatment options.

It will probably be too late to make any difference to my case.

I hope that in the future no one will be penalised for not undergoing treatment that is harmful to their health as a result of your campaigning; that CBT and GET will be removed from the guidelines with immediate effect, rather than waiting for years while the guidelines are revised.

Please please continue the fight for those of us struggling to do it for ourselves