1. Click here to sign the "Publish the NICE ME/CFS Guideline Now" petition.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 13th September 2021 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

CDC CME for medical providers

Discussion in 'BioMedical ME/CFS News' started by Medfeb, Feb 25, 2019.

  1. Medfeb

    Medfeb Senior Member (Voting Rights)

    Messages:
    389
    CDC and Medscape released a CME activity for physicians and other healthcare providers. This CME is a discussion moderated by Dr. Bateman, with Drs. Azar, Klimas, and Montoya as panel members
    https://www.medscape.org/viewarticle/907632?src=acdmpart_cdc

    I have not looked at this yet.

    This is also posted in the thread on Dr. Unger's video but I thought it might be good to have its own thread. I didnt see another thread specifically for this.
     
    Keebird, ahimsa, Aroa and 16 others like this.
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    3,086
    If somebody could create a PDF with the various pages that would be handy.
     
    Yessica likes this.
  3. Medfeb

    Medfeb Senior Member (Voting Rights)

    Messages:
    389
    Last edited: Feb 25, 2019
    Yessica, MEMarge, ukxmrv and 4 others like this.
  4. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

    Messages:
    2,619
    Location:
    Belgium
    Couldn't upload the file because it was too large - which is weird cause it's only 34 pages long.

    But if you go the 'print page' and just annulate the printing process, you can make a PDF of it quite easily. https://www.medscape.org/viewarticle/907632_print
     
    MEMarge, Andy, shak8 and 2 others like this.
  5. Hutan

    Hutan Moderator Staff Member

    Messages:
    16,009
    Location:
    New Zealand
    This seems like a typo - Should that be 'Pain is a nonspecific symptom, but supports the diagnosis of ME/CFS', given that PEM is discussed elsewhere?

    image.png
     

    Attached Files:

    Yessica, WillowJ, Ravn and 4 others like this.
  6. Hutan

    Hutan Moderator Staff Member

    Messages:
    16,009
    Location:
    New Zealand
    I've done it, and passed!
    I like the idea of it, but I wonder how much a GP with no real knowledge of ME/CFS would learn from it. PEM is a difficult concept to get across.

    Also there is the emphasis on unrefreshing sleep. One option that doesn't support the diagnosis is along the lines of 'I feel better after a nap'. I knew enough to not say that was diagnostic, but truth be told when I have crashed (not just PEM but full on feeling cold, slurring words, desperately needing to lie down), a sleep helps a great deal.

    Also there are charts showing symptoms that have to be present more than 50% of the time. But it's difficult to interpret that idea. If symptoms depend on an over-exertion (relative to a pathetically low baseline), then many symptoms may not be present if I don't over-exert.

    So, I applaud the idea, but I think it's going to take some fine-tuning to produce a short online lesson that will ensure GP's know what they need to know about ME/CFS and can accurately diagnose it.
     
    WillowJ, Ravn, andypants and 9 others like this.
  7. ladycatlover

    ladycatlover Moderator Staff Member

    Messages:
    3,313
    Location:
    Liverpool, UK
    So are you going to give them your feedback?
     
    MEMarge, Yessica and Hutan like this.
  8. obeat

    obeat Senior Member (Voting Rights)

    Messages:
    616
    Could it be a basis for a review of RCGP METRIC ?
     
    Trish likes this.
  9. Hutan

    Hutan Moderator Staff Member

    Messages:
    16,009
    Location:
    New Zealand
    Good point. There is an inbuilt evaluation module, but it is quite a rigid thing focused on whether or not I am going to apply what I've learned to my clinical practice. I'm not sure how to provide comments. If anyone else does the activity, perhaps they could look out for that?
     
    Yessica, WillowJ and ladycatlover like this.
  10. ladycatlover

    ladycatlover Moderator Staff Member

    Messages:
    3,313
    Location:
    Liverpool, UK
    This is a bit off topic, but I just filled in a questionnaire for the UK BioBank (Not the ME BioBank) on Pain and Sensation. It was interesting, not least because some of the questions had a copyright sign at the bottom for Psychosomatic Research (or something like that). It was quite long, took about 20-30 minutes maybe.

    There were a lot of questions on fatigue, which I found really difficult. However at the end you could give feedback, so I noted that I didn't so much suffer from fatigue as fatiguability. This seems to be something that doesn't get looked at, it's completely different to "fatigue".
     
    MEMarge, WillowJ, Ravn and 7 others like this.
  11. Mithriel

    Mithriel Senior Member (Voting Rights)

    Messages:
    2,152
    Yes, it is fatiguability I get, not fatigue as such. I can tell how bad I am by how quickly I have to stop rather than whether I can start if you see what I mean :)

    I definitely have ME (diagnosed by a consultant before CFS was invented) but in the bad days when I had young children so had to carry on long after I should have stopped (I often crawled to feed them, things like that) a 5 minute nap helped me keep going. It felt like it removed toxins from my body.
     
  12. Medfeb

    Medfeb Senior Member (Voting Rights)

    Messages:
    389
    Thanks for taking this and posting about it, Hutan. I emailed CDC staff on the typo and hopefully, they can fix it quickly.

    Good points on challenge of conveying PEM and symptoms only being present if you overexert. Are there any other specifics you would like to see addressed in fine-tuning?
     
  13. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    1,419
    I passed, too! Shall we open a clinic @Hutan ;)?

    Of course I'm not a doctor so have no idea how doctors usually study but for myself I didn't find the format very conducive to learning. If I hadn't already known the material I think I would have found it very difficult to take in.

    First I watched the video for a bit but kept losing focus as I always do when there's just people artificially talking back and forth giving lists of information (I need a story line otherwise it's in one ear and out the other, leaving no trace in my memory). Also I can't read slides and listen at the same time so had to constantly stop the video.

    Got sick of that and started reading the transcript instead. Quickly moved to skim-reading as very long (so obviously the video would have been long, too, had I watched to the end). I didn't find it helpful to have the relevant information padded out into a question and answer chat format. Too much distracting stuff around the salient bits. And just way too much to read.

    Then tried downloading the slides. Of the three, that was the best way of presenting the info. Just the important bits.

    But I would have thought presenting more, and more in-depth, case studies of patients being diagnosed as having - and not having - ME would have been a better way to cover the material.

    Also, PEM needed to be better explained and contrasted much more clearly with the sort of post-exertional fatigue common in other illnesses.

    The test afterwards wasn't exactly challenging.
    Didn't do the evaluation bit either, for the same reason. I couldn't see anywhere I could give the feedback I wanted - but that might have been because by then the text was doing a sort of psychedelic dance across the screen, always a sure sign my brain needs a rest.
     
  14. Hutan

    Hutan Moderator Staff Member

    Messages:
    16,009
    Location:
    New Zealand
    Exactly.

    Why just these specialties? It seems an odd list. Obstetricians and gynaecologists? In my part of the world, between I and my children, we were seen by infectious disease specialists, paediatricians, gastroenterologists, a rheumatologist, a psychologist, an endocrinologist and an ophthalmologist. [Edit - oh, and one neurologist - clearly my subconscious is trying to bury that horrible experience]. Not once did we see an obstetrician or gynaecologist. This list feels a little bit like throwing the illness in the 'women's problems' drawer.

    No mention of the 2 day CPET. While not everyone will want to, or should, do it, I would have thought it should be mentioned somewhere.

    I agree with the use of these in a clinical setting. They seem to get at the heart of the condition pretty well.

    Screen Shot 2019-02-28 at 3.18.49 PM.png

    If the doctor isn't quite clear what PEM is, and the patient has no idea what PEM is, this could be a very confusing conversation. Perhaps there could be a suggestion that the doctor ask the patient to keep a diary of activities and symptoms for a period of time, so that both patient and doctor can see if there is a pattern of delayed exacerbation of symptoms. And perhaps the doctor needs to ask 'when do symptoms start or get worse?'.
    And there is the complication that people severely affected may be in PEM all of the time.

    Great that orthostatic intolerance testing is strongly advocated.

    Screen Shot 2019-02-28 at 3.30.14 PM.png

    I'm not sure about the first point. There's a typo in the second point, and I don't think it's the best point to make there. Better to say that a diagnosis helps patients find resources and supportive social networks that can help with coping.

    Screen Shot 2019-02-28 at 3.34.23 PM.png
    This was in a slide talking about the one case study. I'm not clear about the diagnostic significance of EBV titres. Is that controversial? If it's not a widely held view, perhaps it's best left out?

    Screen Shot 2019-02-28 at 3.40.56 PM.png
    I think I'd like to see more about management as that's where doctors can make the most difference. For children, it's often more than adjusting schedules; it may be distance education or postponing formal education. For adults, it's assistance to negotiate with employers and to get benefits and home help. It's putting people with ME/CFS and their carers in touch with support groups. It might be finding permanent residential care or respite care. It might be finding a counsellor to help people cope with the losses. Basically all of the support that a doctor would give anyone diagnosed with a debilitating disease that is likely to require long-term adaptation.

    Perhaps there needs to be more information for doctors to understand the impact of the disease? I don't recall anything about disease outlook other than there can be spontaneous remissions.

    Overall, it's not bad.
     
    Last edited: Feb 28, 2019
    Yessica, Keebird, MEMarge and 7 others like this.
  15. WillowJ

    WillowJ Senior Member (Voting Rights)

    Messages:
    671
    Probably because a gyn can be a primary care doctor (and I guess OB because it tends to run with gyn. If you go to a urogynecologist that's now considered a specialist and not eligible to be a PCP, or requires a referral if your insurance asks for those.)
     
    Hutan likes this.
  16. WillowJ

    WillowJ Senior Member (Voting Rights)

    Messages:
    671
    This. I agree that the way this is currently interpreted is incorrect. I read a paper by Fukuda (not the actual diagnostic criteria, but a later paper) where he explains that the reason for talking about not improving with rest was to distinguish from things like overtraining syndrome (not sure he said that phrase exactly, but was definitely talking about excluding symptoms arising from overexertion).

    If that was followed it would weed out all these people who went for a sail and got cured "from ME".

    Some patients report not feeling better after a nap.

    I don't feel better if I am crashing as opposed to having a rest, but if I can get to the point where I am actually resting instead of just shuddering in bed, then I do feel better. Not cured in any way, just somewhat less bad.

    Napping is more a way to recover from not sleeping, or the most recent episode of PEM, or the most recent episode of sleeplessness from PEM, then to recover from ME.

    But it's not no good. The danger of saying naps are no good, is that then doctors will say not to rest in bed (as it doesn't help anyway and they are very enthusiastic about the benefits of being up and about, and know nothing about the risks of ME), and most of us need to rest in bed in order to not get worse (whether we can sleep well enough to be helped by a nap or not).
     
    Cheshire and Hutan like this.
  17. Medfeb

    Medfeb Senior Member (Voting Rights)

    Messages:
    389
    @Hutan - Great comments. Thank you for sharing

    BTW, This slide was fixed
    upload_2019-3-1_7-29-53.png
     
    Yessica, Ravn, Hutan and 4 others like this.
  18. Hutan

    Hutan Moderator Staff Member

    Messages:
    16,009
    Location:
    New Zealand
    I must say, I have shared this CME and Dr Unger's 5 minute video that promotes the updated CDC content with a team in the local District Health Board (in New Zealand). And they see a lot of potential in this kind of thing for educating doctors; they were quite enthusiastic. I think it being free is a major attraction, as well as it being something that doctors and nurses can do when they have a need and have the time.

    So, I guess I need to be conscious of not letting the perfect be the enemy of the good.
     
    andypants, Ravn, rvallee and 4 others like this.

Share This Page