A few preliminary thoughts and questions come to mind in response to the latest update on the proposed MEGA Trial.
- Question: How are patient advisory groups to be recruited?
- The update says:
How much data we collect will depend on what our patient advisory group says will be acceptable to consenting patients and how much funding we get.
I’m concerned that this will be used as an excuse not to develop the very important Canadian Criteria cohort – Profs White and Crawley have already decided that the Canadian Criteria are not practicable
- Clinicians who diagnose at the NHS clinics can often be OTs, nurses etc. Some of these may be very good but some have very little experience of ME/CFS. It seems inevitable that they will be focussing on what they believe to be the key symptoms of ME/CFS and not necessarily taking a full and complete history.
- We know from experience that NHS notes in general can be inaccurate as often as not.
- What about the severely affected who can’t get to clinics? Some clinics provide a limited home visiting service or skype/telephone consultations but the vast majority of the severely affected do not receive these services and so will be excluded from the trial. As Prof Ron Davis says, the severely affected provide the most important data.
- There is circumstantial evidence that many patients are rediagnosed by some of the clinics as having ‘pervasive refusal syndrome’ or ‘illness anxiety’ or some other ‘psychogenic’ condition if they don’t make progress with GET or GAT or if the clinic doesn’t think they will make progress. These patients may be at the more severely affected end of moderate so their elimination will skew the cohort.
- Similarly, we know that many patients who drop out of therapy are not followed up on. It seems likely that these will not be included in the project, so once again the cohort will be skewed.
- The update says:
We don’t think we will have the money to do this for everybody or for everything.
This is already sounding a bit half-baked. We’ve had enough such research. Isn’t it better to set out to do less and do it properly?
- The clinics in general subscribe to the biopsychosoial model of the illness. Given what has happened with the now largely discredited PACE Trial, it is understandable that informed patients will be mistrustful of a study which has the NHS Clinics at its heart. In its presently proposed form and on first reading, this project seems to me to be unlikely to obtain the support of the whole ME/CFS community. This is unfortunate and I hope that another way of proceeding can be found.
spoonseekerdotcom 
Selection is a one of the big issues to me. I attended a “CFS clinic” for my first and last appointment 10 years ago, when I was a mild sufferer. I am now moderate and no longer working, but as I do not attend a CFS clinic I would appear to be not eligible for inclusion in the study, and there will be a huge number of sufferers who are in a similar position. I guess though I’m preaching to the choir here 🙂
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Yes, I’m afraid 95% of patients won’t read about our reservations here and will go along with this thing. But they won’t form a representative sample and they’ll only be adding to the growing pile of misinformation about ME.
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Clicked ‘like’, but not sure it’s the right sentiment – can’t help thinking “not again!” Just started following this blog – thank you for keeping us informed about this.
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Thanks for reading. I just wish the circumstances were different (as they say). I’m finding this depressing today. Just as we’re cracking PACE, here comes another load of twaddle, and the major ME charities are going along with it. I am reminded of the name of the ME Association’s survey last year: ‘No decisions about me without me’. They seem to have forgotten it this time.
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They shouldn’t be allowed to make disempowering ‘diagnoses’ by opinion only. Attaching labels like ‘hypochondriac’ and ‘persistent refusal’ to a patient’s notes without solid evidence–which is impossible–, when a preferred ‘treatment’ proves not to work, or ‘tests’ fail to be the right ones to detect the real problem, is actually libellous malpractice which endangers the life of the patient through future disbelief and even victimisation. It needs to be come down on hard in a medical negligence test case as soon as possible. It’s impossible to know how many people this practice has killed, but I’m sure–having seen at first hand how physical illness is ignored through routine disbelief of patients in psych units–that the figure must be a high one.
I did read in a quote from DSMIV, that there was a warning against ‘diagnosing’ hypochondria, because it is so difficult to prove no other illness. As the manual is expensively paywalled, I don’t know if the warning still exists in DSM5, but it is self evident that few UK medical professionals tend to give the patient any benefit of doubt. The undue confidence shown by the CBT cult is a danger to us all.
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It seems to me that mental health in general is diagnosis by opinion. You are right about the amount of suffering caused by these random psychogenic diagnoses of course, but maybe there is some glimmer of awakening to what is going on. Was it you who sent me this?
https://www.researchgate.net/publication/283476227_Psychogenic_explanations_of_physical_illness_Time_to_examine_the_evidence
Two friends of mine were given the ‘illness anxiety’ diagnosis, previous diagnosis of ME/CFS taken away. I’ve been assuming ‘illness anxiety’ is the new name for hypochondria. Perhaps it’s safer from the medical point of view because it doesn’t say that the patient isn’t ‘properly’ ill, just implies it.
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I thought I should go and check that. Medline Plus says: ‘Illness anxiety disorder is a preoccupation that physical symptoms are signs of a serious illness, even when there is no medical evidence to support the presence of an illness.’ So as long as the doctor has done the routine tests and nothing’s showing up they’re in the clear. It strikes me that this diagnosis could be given to anyone with ME who is expressing entirely understandable anxiety about their condition, as there are no routine tests. A good way to get rid of a patient who they don’t think is up for graded exercise.
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Yes, that’s precisely it. The shrinks are in a no lose situation, where there is no evidence because the medical profession is following their advice of not supporting patients’ ‘delusions’, and patients that demand proper efforts at diagnosis just ‘prove’ that their delusions are too strong to cure, so it’s not even worth sending them to the CBT/GET clinics. Perfect Catch 22. And the Wessely school is laughing all the way to the bank, while patients die of neglect and despair.
It should also be emphasised, that once you have a word like ‘hypochondria’ in your records, you can’t get it out, and even the lowliest nurse in hospital finds it and copies it to someone else, and soon, all the ward staff are scowling at you and trying to get you out. You can apply to put a clarification in your records, but even in law, you can’t get the words removed, so they just follow you for the rest of your life. You only have to think of how difficult it is even to get a change of address propagated through the NHS/DWP computer shambles, to see that it wouldn’t go away, even if there was a law to remove libel from records. I still find NHS computers that have me in a mental recovery unit from 4 years ago, and still get mail redirected from there!
A psych label is a brand for life: and whatever Wessely and White may say about wrongly negative attitudes to psych labels, they still know very well, what they are doing, when they brand you for their own. 😦
I don’t think I passed you the link, but I do get through a lot of them!
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Just a follow up to say thanks for the tip on the Wilshire and Ward paper. Took me all evening to read, but a very good effort to put down carefully what many of us would be too offended to contemplate: the fallacies in the psychgenic arguments are so glaring, it just seems stupid to even give them the time of day, so, hats off to Wilshire and Ward for going where angels fear to tread! (y)
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