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

Discussion in 'Training courses' started by Andy, May 11, 2020.

  1. obeat

    obeat Senior Member (Voting Rights)

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    910 downloads to date. A broad mixture of healthcare professionals and 97% said that they would recommend it.
     
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Very good. Though I imagine some are patients like me who had to take they were a healthcare professional to access it.
     
    alktipping, Hutan, ukxmrv and 4 others like this.
  3. Andy

    Andy Committee Member

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    Funding secured for M.E. education module in Scotland
    https://www.actionforme.org.uk/news/funding-secured-for-me-education-module-in-scotland/

    https://twitter.com/user/status/1318575349928775680
     
  4. Andy

    Andy Committee Member

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    18,088
    Location:
    Hampshire, UK
    https://www.actionforme.org.uk/news/cpd-module-to-assist-health-professionals/
     
    ahimsa, cfsandmore, Ebb Tide and 8 others like this.
  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    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.
     
  6. Hutan

    Hutan Moderator Staff Member

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    20,967
    Location:
    Aotearoa New Zealand
    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: Feb 19, 2021
    Sarah, cfsandmore, Dolphin and 6 others like this.
  7. Andy

    Andy Committee Member

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  8. Hutan

    Hutan Moderator Staff Member

    Messages:
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    Location:
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    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?
     
    obeat, Peter Trewhitt and Trish like this.
  9. Andy

    Andy Committee Member

    Messages:
    18,088
    Location:
    Hampshire, UK
    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/
     
    cfsandmore, Michelle, Amw66 and 4 others like this.
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    20 December 2021
    Free online ME/chronic fatigue syndrome training for health professionals
    https://www.csp.org.uk/news/2021-12...atigue-syndrome-training-health-professionals
     
    Dolphin and Peter Trewhitt like this.
  11. Trish

    Trish Moderator Staff Member

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    43,384
    Location:
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    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.
     
    alktipping, JemPD, obeat and 5 others like this.
  12. Nightsong

    Nightsong Senior Member (Voting Rights)

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    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 -
    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:
    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: Mar 28, 2022
    alktipping, JemPD, Hutan and 2 others like this.
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    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.
     
    Nightsong, alktipping, shak8 and 7 others like this.

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