Irish Independent: ‘No one chooses to have ME – everything changed when I became ill’ [Tom Kindlon Oct 30] As a new study suggests that ME can be beaten through therapy and exercise, long-term sufferer Tom Kindlon says it’s not that simple:
I have been annoyed that the illness has not got the research I feel it deserves. I believe one reason for this has been the attitude that all patients need to do is push themselves to exercise more. One example is the PACE Trial that hit the headlines this week. It found that patients who did graded exercise therapy or cognitive behaviour therapy (CBT) did a bit better than those who had no individualised therapy when they were questioned after a year.
However, this difference disappeared when they were assessed at a later point. More importantly, the improvements that have been found are almost exclusively in questionnaire scores. The people who did CBT or graded exercise were no fitter on an exercise test compared to the no therapy group. Perhaps most importantly, all the groups had similar levels of absence from work and receipt of disability payments actually increased across the groups. If graded exercise and CBT had an effect, it was marginal.
Daily Telegraph: The harsh reality of living with ME [Nathalie Wright talks to James Rothwell, 31 October 2015]
If you take away from my story just one fact about ME, let it be this: it severely limits the patient’s capacity to function as a human being. I was reduced to a body on a bed in what should have been the prime of my life – yet in the grand scheme of ME suffering, I consider myself to have got off relatively lightly.
I can’t help but feel angry the disease is so poorly understood. This week an Oxford University study claimed that graded exercise therapy and cognitive behavioural therapy can help overcome it. Its findings are fiercely disputed by a number of leading experts in the field. Among the voices of dissent is that of Dr Ronald Davis, of Stanford University. “I’m shocked it was published,” he said.
I’m shocked too. My ME remains extremely life-limiting, but I have nevertheless improved a lot and am much better than thousands of severe sufferers around the world who are often ignored.
HuffPost Young voices blog: You Aren’t Entitled to an Opinion on My Chronic Illness [by Rosie Fletcher, Nov 5 2015]
These [media] articles woefully misunderstand what is meant by GET and CBT. They are not “positive thinking and exercise” as has been reported.. M.E. is a broad diagnosis and there will be some people who will, over time, benefit from these two therapies. I’ve just begun a course of Graded Exercise Therapy: it aims to slowly but surely build up my strength and, as a comparatively active sufferer, I have high hopes. But given that the most severe sufferers can’t open their eyes in bed, illustrating articles with happy joggers is as relevant as illustrating them with a panda in a hat. I will keep saying this until people stop suggesting that you can exercise yourself better: you cannot walk M.E. off. It is not a big dinner.
As for positivity, the people with chronic illnesses I know are some of the most positive people you could hope to meet. Every time they go to work and volunteer, every time they cook a meal or change a bed, every time they face another doubting doctor or inaccurate article, they are telling a disease that could so easily get the better of them: “Not today.” We are positive, resilient people with a deep desire to be rid of the weight of this disease.
Disabled in Tory Britain blog: Tory Majority Day 85: What’s Also Wrong With The MECFS PACE Trial – The NHS Should Have Done The Critical Analysis So Tom Kindlon Didn’t Have To [Lindy, Nov 1 2015]
Because I’m a warhorse of an ex-NHS employee, academic and an ex-clinician, the experience of having CFSME in Britain has been, to put it politely, an education.
I have gone from being a person who entirely supported and believed in the NHS and had the deepest respect for most clinicians that I worked alongside or met along the way, to a person totally jaded by a system that can allow such terrible treatment of ME CFS patients continue unquestioned.
Disabled in Tory Britain blog: Tory Majority Day 87: PACE Trial 2 – Why Wasn’t My Experience Of Attending An NHS CFSME Clinic Evaluated?
It’s important to evaluate ALL patients that have experienced a treatment, whether they complied with the treatment (that means attended, followed advice and finished the treatment programme) or not.
By excluding CFSME patients like me, who weren’t able to continue with the CMG [for GET] because attending it made me iller, it automatically skews the results, as any researcher will tell you…
My experience of increasing symptoms through attending the CMT will never be formally captured, neither will the experiences of the other people who didn’t complete it either.
CB told me that only half of the CMG who started the group finished it. So in one cohort, that’s a 50% compliance rate. That’s also only 50% of the people who were evaluated. Accepting that some of that 50% won’t have returned a form, that’s not a high number of evaluations as a percentage of patients who started the CMG.
The interaction with the physiotherapist who suggested that I could continue exercising and didn’t ask the extent of my leg injury before giving me that advice, will also never be fed back.