UK: ME/CFS CPD module from Study PRN and supporting podcasts

I've just done it, and I was a little bit disappointed. It's pretty good. My major concern was that, by mentioning findings from preliminary small studies, it might undermine its credibility.

For example, it says that hEDS is a relevant co-diagnosis and that 20% of people with hEDS have ME/CFS. Also it notes that "recent published case reports suggest low dose naltrexone may be helpful in at least some patients with ME/CFS". There's a question on fibromyalgia where the logic of that being the correct answer seemed a bit questionable.

There was a question about quality of life, with a whole lot of conditions with scores in the 60% range, including, from memory, something like renal failure, and you had to guess what ME/CFS's score is. Which was 47%. I know there are some studies on this, but I think there are enormous biases in such studies. I appreciate that the question got across the idea that ME/CFS is awful, and it truly is, and severe ME/CFS is exceedingly awful, but I do think that there's a risk of claiming too much, so that the claim does not seem reasonable. I think it's better to represent the 'disease awfulness ranking' studies in more qualitative terms, by just saying that studies on patient well-being consistently rank ME/CFS as among the most serious of diseases.

There was a question about strategies shown to improve the medium to long term probability of a return to work in patients with ME/CFS, and the answer was 'early rest'. I mean, it's highly possible, but I'm not aware of a convincing body of evidence to support the statement.

It mentions in the introduction the two peaks of incidence (adolescence and aged 30-50). I am not convinced that there is strong enough evidence on this to be stating it so definitively. I think it was a Scandinavian study that found that, but I think another study found something else. Perhaps there was some environmental factor relevant to the Scandinavian sample. And frankly 10 to 20 and then 30 to 50 years is a rather long time for peaks, especially if you consider that many people aged over 50 and certainly 60 will have most levels of reported fatigue and reduced function written off as 'getting older' or part of their existing health conditions. What are we supposed to take from the information about the two peaks - that if someone turns up with the symptoms of ME/CFS and they are aged 25, they probably don't have ME/CFS? Really, it would be better to say in the introduction that it can affect people of all ages, cultures and ancestries so that health professionals bear ME/CFS in mind for the widest possible group of people.

In the introduction, 'there is a reduction in the quality life of family members' is mentioned before saying that ME/CFS has a major negative impact on the quality of life of patients - which seems an odd prioritisation.

The International Consensus Primer for Medical Practitioners is given as a recommended reference - I think this is an outdated document that has quite a few issues.

The correct answer given for a phrase to define ME/CFS is 'a complex multi-system disease' which uses 'complex', a word I think is quite unhelpful, as I've mentioned elsewhere.

There was lots of good stuff, making it clear that GET doesn't help, and making the point that ME/CFS isn't a MUS.

But I'm a bit concerned that the whole training course might be dismissed by many of the people it needs to convince because it sort of tries too hard to show that ME/CFS is an awful, biological disease. It felt to me a bit like something I might have produced during a phase earlier in my ME/CFS experience, when I still thought that a published paper represented some sort of truth, and was putting too much faith in the findings of fairly poor biological research. I hope that the writers of the course will seek some feedback and revise it.

 

I'm sorry I seem to be relentlessly picky about this CPD module - but what's with the image of the woman with the red spots and no nose or mouth? How is that accurately conveying something about ME/CFS?

 

I just got around to doing this CPD module. While I can see that a lot if thought and effort has gone into it, I am concerned. To me it seems the emphasis is wrong, with far too much dubious biomedical stuff and not enough about how to diagnose and care for patients.

Many of the explanations are based on research that has not been replicated, leaving the reader with the impression that much more is known with some certainty about the biochemical basis of ME than is actually the case.

I think it would be better to be honest about the paucity of research on ME and resulting lack of information on what is really happening biologically.

In a training module for doctors I think we need far more emphasis on clear teaching of diagnostic criteria and what steps the doctor should take to confirm diagnosis and to understand how severe it is, then a clear explanation of what their roles and responsibilities are for ongoing care, including explaining pacing and the potential harm of GET, and symptomatic treatments, and things like not confusing it with depression on the basis of questionnaires.

 

I've just started new version. I think my comments above still mostly apply. Some of the reading list seems oddly chosen.

For example, here is the first paragraph of explanation for the answer to the first question:
"ME/CFS is a chronic, multi-system disease with different patterns of onset and severity. The biomedical explanation of ME/CFS is evolving rapidly in response to emerging evidence in the literature. Scientific advances are revealing neurological, immunological, autonomic, and energy metabolism impairments. In the context of the coronavirus pandemic, it has been hypothesised that specific mechanisms that prevent recovery in some intensive care unit patients also underlie ME/CFS. These can include suppression of the pituitary gland, inflammation, oxidative and nitrosative stress, and low thyroid hormone function."

That's the first mention of coronavirus in the module, and instead of talking about a subset of Long Covid being ME/CFS, there's some odd speculation about suppression of the pituitary gland in ICU patients being a mechanism that underlies ME/CFS. That's a way to create confusion, and skepticism.

I'm disappointed. I know people have offered assistance with this, but it was not taken up. We all want this resource to be something that we can recommend to others.

 

There is some good material in there - descriptions of PEM, and differentiating it from post-exertional fatigue for example. A few of the problems I noted above in the last version aren't in this version.

I don't think this resource needs to suggest that FND and somatic symptom disorder are real diagnoses that can be successfully treated with exercise.

It would have been good to have seen a careful unpacking of what Long Covid is - a collection of post-Covid consequences that may not have much to do with each other when it comes to treatment e.g. lung damage, ME/CFS, PTSD, heart damage. If people meet ME/CFS criteria after a covid infection, then by definition they have ME/CFS.

There are a number of statements that I'm not sure about, especially suggestions of treatments. I'm interested to check out the references supporting some of the recommendations. The recommendation for LDN is still there. Oxalocetate is mentioned uncritically as a treatment. I wasn't aware that increased lactate is a proven feature of ME/CFS, maybe it is. There are a lot of statements made on the basis of preliminary research.

It would have been wonderful if the content of this resource could have been workshopped on the forum - I am sure it would have strengthened the course. I think it could also benefit from the views of skeptical doctors - what is convincing and what is not. I won't be recommending the current version.