Our chairman, Neil Riley, wrote this in the winter 2014 edition of our membership magazine, ‘ME Essential'.
My sister Kate lives in Australia. In August she came to Europe with her husband for a holiday. Their first port of call was Amsterdam.
I was too ill to meet her so my daughter, Rachel, went and took along her IPad. And so it was that on a cold, wet Saturday morning, Kate and I had a “FaceTime” video linkup as she sat in an Amsterdam coffee house whilst I was on the sofa at home.
I said I was so sorry that I could not make it to Holland to see her but explained that I was too ill with my ME. “Oh” she said, “you need to try that Graded Exercise therapy, it was in the newspaper the other day. It can cure you, you know”.
There was a stunned silence here and a gasp from my daughter Rachel in Amsterdam. What could I say? How do you explain to your sister, whom you imagine after all these years, would know about ME, that such a therapy was much more likely to make me worse than better.
I had to end the” FaceTime” link. I then felt the tears trickling down my face. “How could she”, I thought, doesn’t she know me?
I am not the only ME sufferer whose nearest and dearest have doubted them. It is heart-breaking. Only those who live with us each day or who have taken the trouble to understand what this illness is, can see what our life really is like.
Our quality of life is less than cancer and multiple sclerosis patients up to six months before their death, yet we are treated as though we just lack the will to exercise and pick up our bed and walk. The lack of recognition of the seriousness of our illness is a blight on the medical profession.
This is a powerful message that we must get across. Not only to our nearest and dearest but to the world at large.
Oh, this has happened to me, too, it’s heartbreaking, I don’t want it to happen to anyone else. Ever.
That’s why I object so much to the fundraising ‘recovered’ ME sufferers who run marathons and say things like how they pushed themselves to get better. This just gives out the wrong impression. If ME Ass must tell us about these ‘heroes’ then I think they should also publish very loud disclaimers about what exercise does to us. About how so many of us tried to push through and ended up severely ill, bedbound, permanently
Yes definitely……so how DO we get the message across?
Why are people so instistent this graded exercise therapy works when we all know it doesn’t. I tried it when I first took I’ll and it made me a lot worse I didn’t know then M.E was intolerant to exercise. G.E.T isn’t for M.E when will others understand this? It needs to stop being publicised.
I was very lucky I got referred for GET but they refused to see me on the basis I was.too unstable and it would make me worse. She.told.me that it works for only a small percentage of sufferer’ and only.if the have mild ME.
I have a cookie jar with tasks like put washer on empty dishwasher, small tasks and when I feel good I do one of them. A small achievement is better than doing something that will put me.in bed for the next month. When doctors as well as others understand we are not lazy I think the better we will be!!!
It makes you want to weep, doesn’t it? I too have family members who are convinced all I need to do is pull myself together and do a bit more. My downfall came early on in my illness, about 6 months from the original onset; (before my formal diagnosis) my g.p. referred me to a local gym saying the exercise would also help with my obvious depression!? End result? A serious relapse, an enormous worsening of my condition, which my consultant a year later ascribed as attributable to the exercise programme. It would be great to believe mine was a very rare occurrence, but sadly, this just isn’t the case.
Am so sorry to read Neil’s story. My experience since autumn 1982 is to cut loose from those close to you who won’t or can’t accept the limitations of your illness (even when you bend over backwards trying to educate them). It can be very painful to do so, but is absolutely necessary in order to survive. As if having ME is not hard enough. Not being believed is just one more obstacle. As is being told exercise will ‘cure’ you.
The biopsychosocial movement’s conflation of neuroimmune illness with idiopathic chronic fatigue – to goodness only knows what end – has made it much harder for PWME in every way. Neil’s sister probably thought she was doing good by suggesting GET, but she has been hoodwinked by all the nonsense in the media. And we only have that well-known core of UK doctors – and complicit health editors – to thank.
There is a blood test for muscle function. (MITOCHONDRIAL FUNCTION PROFILE TEST)
It is available worldwide.
We MUST start somewere so if we can tell EVERYBODY at EVERY opportunity it just
may help people new to M.E. BEFORE any GRADED EXERCISE THERAPY (GET)
I understand that this is very upsetting when friends and family don’t understand.
I think graded exercise therapy is wrong, and can do so much damage. The way forward in the absence of any other cure, I believe, is pacing, making tiny steps forward, as and when you are able. The two can be easily mixed up, as both may gradually increase activity. For some people pacing can mean that they eventually recover. I am lucky enough to be one of those people, after being quite severely affected, but I believe I am lucky. If someone doesn’t manage to fully recover, I don’t believe it is because they did anything wrong. But we do need to recognise and applaud the ones who manage to patiently take tiny steps to get back to their normal life, it is not an easy road. At the same time, recognising that to continue life, without progress or improvement is also very difficult.
I have to stand up for those who have recovered from ME/CFS, by any means. They need to celebrate their recovery from this terrible illness, and we should all applaud that. Don’t put one sufferer against another even if recovered.
We need to support each other.