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

Funding secured for M.E. education module in Scotland
A collaboration of M.E. charities, led by Action for M.E., has been granted funding from the Scottish Government to support M.E. education for doctors in Scotland.
....
we are now working in partnership with M.E. Association, #MEAction Scotland, The 25% M.E. Group, Dr Nina Muirhead and the UK CFS/M.E. Research Collaborative’s Medical Education (CMRC Med Ed) Group, to disseminate and promote a free online learning module for professionals.
Click to expand...
https://www.actionforme.org.uk/news/funding-secured-for-me-education-module-in-scotland/

 
We're contacting medical schools, professional networks and training bodies to promote the module, and highlight NICE’s new draft guideline for M.E., cautioning against using any therapy based on physical activity or exercise as a treatment or cure for M.E.

Last week, we recorded a podcast featuring Dr Muirhead alongside Anna and Craig, who have M.E., and GP Dr Claire Taylor, to help promote the module – watch this space!
Click to expand...
https://www.actionforme.org.uk/news/cpd-module-to-assist-health-professionals/
 
As I mentioned in another thread:
In the Republic of Ireland, we in the Irish ME/CFS Association have arranged a webinar for GPs for March on postviral fatigue syndrome and ME/CFS.

When we are emailing and posting information to GPs we are also going to give a link to that CPD module.
 
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.
 
Last edited:
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?
 
MEAction Scotland on Facebook

"Clinician and researcher Dr David Strain talks about working with people with #MECFS and #LongCovid in the latest episode of the Action for M.E. Learn About M.E podcast
Complementing Dr Nina Muirhead's CPD-accredited learning module for health professionals, the podcast features Dr Muirhead alongside poet and artist Alec Finlay, talking about the impact of contracting Covid on top of M.E.
MEAction Scotland is working with Action for M.E, the ME Association and the 25% ME Group to promote the podcast and module to health professionals and increase their understanding of diagnosing and managing M.E.
Please share the link to the podcast and module at www.actionforme.org.uk/learn-about-ME"

Code: 
https://www.facebook.com/meactionscot/photos/a.1843189899335429/2982710005383407/

 
20 December 2021
Free online ME/chronic fatigue syndrome training for health professionals
Funding has been provided to UK charity Action for M.E to provide a free, short, online CPD module that offers 1 CPD to healthcare professionals.

The charity is also offering a series of complementary 'Learn about M.E' podcasts to accompany the module, which include the voice and perspective of those with lived experience.

This follows new advice on how to support people with M.E. following publication of the recently updated NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management

The charity's latest podcast on the changes to NICE guidance addresses the adjustments that need to take place in practice to meet the new advice in the guideline.
Click to expand...

https://www.csp.org.uk/news/2021-12...atigue-syndrome-training-health-professionals
 
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 hadn't seen this before; I've just done it. A few comments (under a spoiler tag, as I discuss specific questions):

Q1 - Not sure about the claims that "Scientific advances are revealing a complex multisystem disease involving neurological, immunological, autonomic, and energy metabolism impairments." and "These range from immune cell and mitochondrial dysfunction to abnormal exercise physiology and visible chemical changes on brain magnetic resonance imaging. Inflammation, oxidative and nitrosative stress, gut mucosal barrier, microbiome and bioenergetics are all altered in ME/CFS".

Q2 - I wouldn't use PENE as a synonym for PEM; it's a fringe term. There's no robust basis for the concept of "neuroimmune exhaustion". It would also be good to add the new NICE criteria & definitions here.

Q4 - alternating diarrhoea & constipation would not make me certain that fibromyalgia was the correct diagnosis here.

Q5 -
Based on his presentation, what further condition might you be most likely to find in a young person wwith myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?
...
IBS, hEDS and PoTS may all be relevant co-diagnosis to consider in this case
Click to expand...
The symptom list makes no mention of hypermobility or joint pain and, although the patient has abdominal pain the diagnosis of IBS requires altered bowel habit or pain associated with bowel movements. The symptoms described are entirely consistent with (just) ME, and I think it's a mistake generally to present IBS/hEDS/POTS as common co-morbidities.

I hadn't seen the linked reference to a population based case-control study before, suggesting an increased risk of non-Hodgkin lymphoma in certain CFS-diagnosed populations. In fact, I don't think S4ME has a thread on it...

I also don't think that patients with "pervasive refusal syndrome" necessarily want to die.

Q6 - Taking her BP and HR is obviously necessary but I'm not sure a 10-minute lying/standing BP/HR test tells you much. The patient can probably tell you if she has orthostatic intolerance. With pheochromocytoma and paragangliomata (both mentioned as possible differential diagnoses) the hypertension can be either continuous or episodic but wouldn't necessarily be provoked by orthostatic stress.

Secondly, I don't think ME is associated with a plantar extensor response ("Multiple Sclerosis may present in a similar way to ME/CFS in the early stages of illness and both can display a positive Babinski sign or upgoing plantar reflex.")

Thirdly, I've not looked into the validity or reliability of the diagnostics behind "MCAS" before, but this:
Another differential diagnosis is mast cell activation syndrome (MCAS) which may be detected on serum tryptase and 24-hour urine screen for N-methyl histamine and prostaglandin.
Click to expand...
N-methylhistamine is one of the metabolic inactivation products of histamine; it would seem to me that urinary levels would be affected by dietary intake of histamine? And again, not sure about the value of presenting this as a likely diagnosis.

Q8 - If he is struggling to chew and swallow tube feeding might be necessary, but nutrient drinks might well be tried first. Also, a 33 y/o with his third chest infection in 6 months.. has he had a CXR? Lots of things to consider before even placing a NG tube, I think, let alone the recommended PEG.

And "excitatory neurotoxicity of the limbic-hypothalamic-pituitary axis"? No.

There's some good stuff in this CPD, but an overreliance on poor-quality "biomedical" findings, and plenty of comments on hEDS and suchlike which would be better excised.
 
Last edited:
Nightsong said:
I hadn't seen this before; I've just done it. A few comments (under a spoiler tag, as I discuss specific questions):
Click to expand...

That's pretty much a perfect match for my own thoughts.
Improving on this would not be hard I suspect. Stick to the relevant bits and trim out the flaky stuff.
I think the bit about the Babinski certainly needs to go. The last thing we need is doctors missing important neurological diagnoses because ME is said to cause upper motor neurone signs.
 
Merged thread

FREE online resource composed of 10 clinical cases assessing your knowledge of ME/CFS. You'll receive 1 hour of CPD on successful completion of the resource.

  • Date (DD-MM-YYYY)

    23-05-2022 to 23-05-2023

    Available until 23rd May 2023

  • Cost

    Free
    Resource Overview
    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a common and severe complex multisystem disease with many sufferers waiting years for a diagnosis. The narrative and education to date have neither aligned with the patient experience of this illness nor communicated the emerging biomedical evidence.

    Following the coronavirus pandemic, thousands of people will know how severe and debilitating the symptoms of fatigue can be. Millions will understand the experience of being housebound, but for most these experiences will have lasted days, weeks or months.

    Imagine feeling viral, exhausted, unwell and in pain, confined to your bed or house, lying in a dark room for years or even decades. The world has been shocked by the damage that viruses can do, and soon we will need to examine the consequences of chronic post-viral illness including ME/CFS.

    In writing this module I have started from scratch. I have drawn on the international peer-reviewed literature and emerging international ME/CFS educational resources and have been fortunate to receive significant contributions from medical experts, scientists and patients.

    I am humbled by the contributions of those who are severely ill and the effort and energy they have devoted to this collaboration. I recommend that you read the four pre-course peer-reviewed papers before embarking on the learning module. It would be of great help if you could take a minute to click through the pre-and post-course questionnaire so that more accurate information can be gathered to help develop and update future ME/CFS learning materials.

    This module is just the start. There will be some who take time picking through the evidence and I welcome your opinion and future collaboration. For others, it may be an extra CPD point. For the patients that are recognised, believed and diagnosed, because you have taken the time to do this learning module – it could be life-changing.
    Click to expand...
https://cpdmatch.co.uk/courses/7766804977/myalgic-encephalomyelitis-chronic-fatigue-syndrome-cpd

not searched for more info on this; ie who is the author (email contact is klowe).
 
Last edited by a moderator:
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.

Deconditioning and reconditioning in relation to illness and injury are common concepts and the basis for the widespread recommendation of physiotherapy and exercise for rehabilitation. Patients with disorders such as PTSD, FND, and somatic symptom disorder have been shown to benefit from exercise.
Click to expand...
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.

Post-exertional malaise is a diagnostic feature that distinguishes ME/CFS from most other chronic conditions but is also found in some patients with long COVID.
Click to expand...
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.
 
You must log in or register to reply here.
Back
Top Bottom