In an earlier post, I published an email from Leeds ME Network to Sonya Chowdhury, CEO of Action for ME, expressing reservations about the presence of Profs White and Crawley on the team of the proposed MEGA biomedical research project. Here is the latest update from Leeds ME Network:
In response to our letter to Sonya Chowdhury, we have just received what appears to be a standard letter referring to the latest updates on the MEGA petition page at Change.org. Leeds ME Network have now responded in turn with the following email, slight variations of which will be sent to Ms Chowdhury; Stephen Holgate the CMRC Chair; Dr Charles Shepherd at ME Association; and ME Research UK. Our email follows:
We are grateful to the MEGA team for letting us know about the proposed CFS/ME biomedical research project. We believe it is very important that this study goes ahead but in view of some of the less than helpful research which has taken place in the past (in particular, of course, we are thinking of the PACE trial) we hope you will understand why we patients are keen to voice our concerns about the proposal.
1) The impression has been given that patients for the study group will all be drawn from the NHS Clinics. It seems clear that such a sample would be heavily biased towards less severely affected patients and that the sample would therefore be unrepresentative of the total patient population.
The reasons for this are as follows: Continue reading “Making the Most of MEGA”
The last draft post I wrote about the MEGA petition was superseded by events before I finished it, so I’ll try and crack on with this one before the same thing happens again. Of course ‘cracking on’ in ME terms is still kind of slow but I’ll see if I can break the tortoise barrier.
So, what’s happened recently?
Well, we’ve been told that Peter White is retiring from research and will only be an ‘advisor’ to MEGA from now on. This perspective appears to be endorsed by the latest list of MEGA personnel, which no longer includes him. I can only give a muted ‘hurrah’ to this one. Advice is dangerous stuff and you can still do a lot of damage with it. His PACE Trial is swiftly becoming a watchword for bad science (see here, here, and here). Is he really the sort of ME ‘expert’ that either we patients or the MEGA team want around to guide this latest project?
It really is astonishing that MEGA apparently do still want him around after all he has done, and that they clearly expect patients to put up with it. It seems to me that if a passing Martian was given a brief course in English and the full facts, then even he (or she) would swiftly understand why we don’t want Prof White anywhere near this project. Why do the MEGA team not get this?
People with ME have been left on the scrapheap for decades. I myself have been ill for over thirty years. That’s over half my life. I have no children because of it. I lost my job. My life is very limited. Yet I am one of the relatively lucky ones. I can sit and tap at this keyboard – as long as I take plenty of rests to fend off the shoulder and eye pain and overall exhaustion. There are plenty of others who have to spend all their lives in bed, who can’t stand the light, who can’t even talk to their loved ones. We’ve all heard about Whitney Defoe whose birthday it recently was. He is not alone in his suffering. The vast majority of the severely ill are left to fend for themselves as best they can. Rarely do doctors come near them and they wouldn’t know what to do if they did.
And all this time, all these decades, so little research has been done, in large part because of the fairy story dreamed up by the PACE researchers and their associates: the fairy story that Continue reading “A Broader Picture”
After long opposition (and substantial expense) from the trial investigators and Queen Mary University of London, data from the £5m publicly funded PACE Trial, which studied graded exercise (GET) and CBT therapies for ME/CFS, has finally been released under the Freedom of Information Act. ME patients Alem Matthees, Tom Kindlon and Carly Maryhew, with the support of two prominent US statisticians, have reanalysed the data according to the original trial protocol and illustrated that the recovery results were exaggerated by a factor of four due to unexplained protocol changes. The revised results were in fact statistically insignificant. This means that , in spite of what the investigators claimed, the trial provided no proof that GET and CBT help people with ME/CFS to recover.
Though those who have studied the trial have long suspected that the results as originally presented were grossly misleading, it is still a “gosh- wow” moment to actually witness the proof of this. One is tempted to ask “How did they think they would get away with what appears to be such a deliberate attempt to mislead?”
The answer appears to be that they calculated quite cleverly: they almost did get away with it. The professional reputation of the investigators had led many prominent people to assume that they must be in the right, and that the ME patients who have been fighting to expose the truth (whom the PACE investigators branded as ‘a fairly small, but highly organised, very vocal and very damaging group of individuals’) were unreliable obsessives, eager to discredit the trial simply because its conclusions did not agree with their own beliefs about ME. (In actual fact, the attempt to besmirch the patients in this way appears to have been a classic case of ‘projection’, the investigators having apparently twisted the figures to fit their own mistaken beliefs about the condition.)
Even now, it seems likely that they will stick to the strategy of claiming that black is white and relying on their reputations to Continue reading “The Light of Day”
NICE have recently issued draft guidelines relating to multimorbidity, the not entirely appealing way in which doctors refer to the issue of patients having more than one health condition. There is a consultation period which still has a few days to run – the deadline is 12 May at 5pm. Comments from individuals as well as organisations are welcome, and I finally got round to sending in a few thoughts of my own (as a patient who has ME and also other conditions). I think it is good that NICE have recognised the need to deal with this subject and they have focussed on the important issues of treatment interactions and coordination of care, but there are other issues they haven’t addressed. Much of what I have to say relates to matters I’ve raised in previous blogs, not least the tendency of doctors to assume that complex sets of symptoms are likely to be somatised/psychogenic. Here’s the feedback I submitted:
I don’t feel that the interaction of multiple health conditions has been given due weight in these guidelines. Obviously treatment interactions are important and it is good to see this issue thoroughly addressed in the guidelines. As a patient with multimorbidities, however, I find that little consideration is given to the interactions of the health conditions themselves and the associated effect on symptoms. I have spoken to other patients with multimorbidities and they have had the same experience. If the patient raises the subject of a symptom which is not normally associated with condition A, there is a tendency for the specialist consultant just to say ‘oh, that’s probably due to condition B’ and show no further interest. Meanwhile GPs are so overloaded that they tend to refer any complex issues back to the consultants, so they don’t get addressed. The problem of interpreting multiple symptoms also leads to delays in diagnosis and to misdiagnosis.
Another important and associated issue which is not addressed in these guidelines is the inclination of many doctors to leap to the conclusion that patients who have multiple symptoms (which do not fit the clinical picture of a specific pathology) must therefore have a somatised condition. I refer you to this NHS web page as an example of this unfortunate perspective which I fear is prevalent. As you will see, the advice given on this official NHS site is to keep such patients away from other doctors, to persuade them to dismiss any new symptoms as also somatic, and to develop a ‘therapeutic alliance’ with a close relative to enforce the doctor’s perspective. This imposition of the (often erroneous) doctor’s perspective upon the patient (often enlisting close relatives to overrule the patient) seems to be the antithesis of NICE’s declared intention (as described on Prof Haslam’s blog) of putting patients ‘in the driving seat’. It leads to misdiagnosis and/or late diagnosis of multi morbidities and also of rare diseases as described in the recent Rare Disease UK report. I believe that this issue needs to be urgently addressed, not least because it also leads to the misallocation of valuable mental health resources.
A long time ago, in the early years of my ME, a small study in The Lancet suggested that intramuscular magnesium injections could be beneficial for CFS (as they called it). I took a copy of the study to show my GP, the late Dr Paul Moxon here in Leeds, UK, who read it and started injecting his ME patients in line with the study protocol. In a matter of a few weeks, I went from being largely housebound to up and about again. I made this transition gradually but it is worth recording, by the by, that any deconditioning which might have occurred while I was being looked after by my parents for several years did not present any significant impediment to my remobilisation. When my body got what it needed, I was able to function again. I was by no means cured but the improvement was substantial.
Since then, my ME has fluctuated and at one time I became largely housebound again. On that occasion, magnesium sulphate failed to pull me round – and I understand that subsequent trials of magnesium injections failed to replicate the success of that first study.
Nevertheless I am clear that magnesium injections helped me on that first occasion. I had several courses of six weekly injections. Each time, I began feeling better after the third week. The improvement would be sustained until a few weeks after the course but then tail off again. We eventually discovered that the best regime for me was an ongoing course of injections every three weeks. I kept this up for several years, stopping from time to time to see what would happen. Eventually I reached the stage Continue reading “Beyond the Bounds of NICE”