I’d like to take this opportunity to respond formally to feedback expressed concerning my Editorial in the last ME Essential Magazine. First and foremost, I apologise wholeheartedly for any undue upset that the article caused. The piece was an opinion piece and was never written in a way to diminish or belittle the suffering we have all undergone in our lives.
I’m proud of the work undertaken by the MEA over the last 40 years and the work must continue. I’d like to take this opportunity to clarify some of the things I have said and reassure the community that as someone who has been severely affected by ME/CFS, that I do understand fully what life is like for us day in and day out.
I was not advocating any type of Graded Exercise Therapy: – Heaven forbid. That is the last thing I would do and goes against all my knowledge of the illness. I was concerned that my experience of illness before ME hit me was that, after the initial infection, I would steadily recover. But ME proved me wrong. I still felt terrible. Months and years went by. I still felt unwell. Finally, I thought, to hell with it, I must try and get out of bed even if some symptoms hit me. So, I did. The result was a life that was a bit better. Sure, I got knocked back and still do. Editorials are an expression of opinion and mine was based on my experience, but I fully understand that this is not reflective on many and in future I will not express my experience in this manner.
Allowing your body to rest: – I agree that this is a tough test for us all. Most of us with ME were achievers, driven people who want to do stuff and to try and stop ‘doing’ needs a lot of will power and patience. Nowhere have I advocated ‘not resting’. It is crucial that we do, otherwise we go beyond our energy envelope and relapse. If my phrasing gave the wrong impression, then I do wholeheartedly apologise.
That I was encouraging people to “push through” no matter what: – I did not and do not advise people to do that. I mentioned the risk in staying permanently in bed and the risk of ‘moving’.
“You are dismissive of the lived experience of people with ME”: -That is simply untrue. I have spoken to hundreds of sufferers and read thousands of accounts of the lives of people with ME. In addition, I live it every day and have for 38 years. I hate this illness. It robbed me, as it robs you, of a normal life. The lived experience of ME people is wide and huge. Some mildly affected, some moderate, some severe. If my phrasing gave the wrong impression, then I do wholeheartedly apologise.
The MEA has, for 40 years, been a staunch opponent of the psychological/psychiatric lobby. We know that this illness is physical and biological.
We do not give direct advice but share information and support individuals in making their own decisions about how to handle their condition through the many different methods available such as pacing. There’s no one size fits all treatment. We wish there was.
Currently, in addition to our funding of all of the basic running costs of the ME Biobank at LSHTM, we are funding just about every ME/CFS research group here in the UK and are also in the process of funding a large treatment trial.
Our vision is to improve the lives of those with ME/CFS and we do this by providing information, and support; funding and supporting biomedical research; providing education and training for professionals and all parties interested in the illness.
Of course ultimately we want to find the solution. In the meantime, all of us affected must come together, focussing our efforts and resources on achieving our goals.
Neil Riley,
Chairman of Trustees.
The ME Association.
