• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Controversy over exercise therapy for chronic fatigue syndrome: continuing the debate

Jonathan Edwards

"Gibberish"
Messages
5,256
Did you ever find yourself in a situation wherby a patient came to you with symptoms that at first fell within rheumatology but you couldn't find an explanation for them and ever thought to refer them to a psychiatrist or was this something that you saw lots of other physicians doing?

Where you ever encouraged to do such things by means of the hierarchy or "training" you were given?

I can understand that working in one field you wouldn't necessarily give thought to how rigorous psychiatry was but isn't there some suspicion of psychiatry as a whole within the rest of medicine, surely there must be some given how we see it to be operating now.

I saw a few people with symptoms I could not explain, although not that many to be honest. I never occurred to me to refer such people to a psychiatrist. I saw psychiatrists as dealing with schizophrenia and depression and mania. I had no reason to think they knew anything about the causes of rheumatological symptoms I could not explain. Even if I thought emotional problems might be making symptoms more difficult to cope with I saw that as just part of my job as a rheumatologist.

Colleagues often referred patients with unexplained symptoms to psychologists, but not psychiatrists. The psychologists were supposed to provide support. The ones I met were young and inexperienced and I never really thought my patients would get much out of seeing them. One patient of mine whose problem ended up pretty much as an ME picture came to me with his mother who asked if he could be referred for CBT. I was not keen but since I had nothing to offer I did not discourage her finding someone local. I never discovered what happened as it was just before I retired.

To be honest the antics of White and Wessely does not really seem like psychiatry to me anyway. But I now realise this is a huge growth industry. It used to be confined to private practice psychotherapy but now it seems that it is being sold to health care providers for large sums of money.
 
Messages
2,391
Location
UK
Please please do!

If you could get them to confront the problem of unblinded trials with subjective primary outcome measures and make a policy decision not to include any such trials in Cochrane reviews that would be amazing.

The trouble I see with this is that this would mean they could not include any of the trials of CBT and other therapies, since by the nature of the treatment they are unblinded, and by the nature of the conditions usually treated (anxiety and depression), there are no objective things to measure.

If you could at least get them to exclude trials of psychological treatments for conditions such as ME and the other physical conditions dumped in the MUS dustbin where there are objective outcome measures possible, but none have been used, that would be a huge step forward.

This would mean, for example, reanalysing the effectiveness of the PACE trial using only the 6 minute walk test (taking into account that lots didn't do it), step test and employment data, and excluding all subjective measures. It might also force the likes of Esther Crawley to start using actometers. Still doesn't get around all the other problems with PACE like whether the participants actually had ME and whether they complied with treatments though. I don't really think PACE can be rescued and provide any meaningful data, apart from the fact that despite their best efforts to get the result they wanted, they inadvertently managed to show their treatments make no long term difference.

You point out that part of the problem lies in peer review. The problem is, of course, that the BPS cabal all work together to approve each others trials and review each others papers. And funding bodies are in their pockets too. In a sense Cochrane is the summit of a stinking pile of bad science right up from the foundation of bad trial design. Until that is sorted out, nothing will change.

Sorry, you know all this already. Just letting off steam!
I believe there should be something more formalised regarding the design and running of clinical trials, and maybe a professional specialism in this regard. By formalised I do not mean rigidly set in stone, because I fully appreciate that if you try to clone the management and methodologies of trials, you might seriously hinder the inventiveness needed. But if a specialism existed, then appreciating that very need to allow free thinking and flexibility would be part of the skill set. (I have your comments in mind @Jonathan Edwards from a few days back regarding this). Whilst at the same time fully understanding the fundamentals, the rules that should never be broken, as well as the rules that maybe don't apply in certain circumstances.

To me it feels that maybe every trial should include such a role, perhaps mandatory, and that someone couldn't just self-elect themselves into that role but have qualifications of some kind for it. Such a role would be highly skilled, and would in many ways cut across medical specialism, albeit probably need a sound understanding of them.

It's a bit analogous to safety engineers and safety engineering. When this discipline first came into being, many other engineers no doubt thought it very over the top. But you really would not want to be flying in modern aircraft, or driving modern cars, or having x-rays done, or using all manner of other modern equipment, without safety engineers (who will be degree-qualified in that discipline) being part of the design teams for such things. Safety engineering cuts across other disciplines, and a safety engineer has a lot of authority within a design team, and if the safety engineering aspects are not up to scratch then it's a no-go. There is of course considerable discussion and debate within the whole team regarding safety, guided and managed by the safety engineer - it's not a draconian exercise, but collaborative. Wherever there is significant potential risk to human life or the environment, these folks apply their skills, science and tools to identify the risks and manage them, again with considerable involvement and collaboration of the rest of the team. I can't help thinking something similar applies to clinical trials, where human life is a key facet.

If all trials were run by teams with the competence and will to design and run them well, then such roles would never be needed. But the same could be said for safety engineers and teams designing airliners. There will always be trials lacking the competence and/or will to run them well, and as sure as eggs are eggs, some will go dreadfully wrong - Sod's law.

I have to say, I found it really shocking once I realised this sort of "safety control" does not exist for clinical trials, where human safety is so paramount, not just during the trial, but from the consequences of their reported outcomes. Especially when I then realised something like PACE so tangibly proves the need for such control. I find it mind boggling and horrifying really.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
To me it feels that maybe every trial should include such a role, perhaps mandatory, and that someone couldn't just self-elect themselves into that role but have qualifications of some kind for it. Such a role would be highly skilled, and would in many ways cut across medical specialism, albeit probably need a sound understanding of them.

There was someone in that role from the MRC for PACE. You can take a horse to water, as they say.
 

Keith Geraghty

Senior Member
Messages
491
I have written to Mitchell two times - one might think he would respond given he quotes me in his first paper, yet he hasnt, unfortunately, I dont believe he wants to dialogue on this illness - it seems he just wants to write a viewpoint then close the shop window. Typical of psychiatry I think - write and run/hide. Never heard back from Prof in Scotland who wrote the SMC response either - seems he was also "very busy".