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Goodfellow Medcases CPD - Managing CFS/ME in general practice: new ideas, Mount and Vallings

Discussion in 'General ME/CFS News' started by RoseE, Dec 4, 2019.

  1. RoseE

    RoseE Senior Member (Voting Rights)

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    Split from the New Zealand thread

    This looks new - a case study for working with me/cfs patients from University of Auckland, Goodfellow unit... written by Dr Vicki Mount, General Practitioner, MBChB, DipPaeds, with expert review by Dr Rosamund Vallings
    https://www.goodfellowunit.org/node/468444
    thoughts? review comments?
     
    Last edited by a moderator: Dec 4, 2019
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  2. MyalgicE

    MyalgicE Senior Member (Voting Rights)

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    Plenty, but I need to get over the ‘bedtime carbohydrate snack’ first...
     
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  3. Hutan

    Hutan Moderator Staff Member

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    There are some good things about this case study as well as some bad things.

    From the introduction:
    I don't like people with ME/CFS being termed 'complex patients'. I guess if you want to say the syndrome is complex, ok, but the patient is just a person. Complex usually means 'difficult'.

    This is the first sentence of the case study:
    A two-day history? What an odd way to put it. We later hear that she has been visiting her GP multiple times over the last 18 months, after likely EBV infectious mononucleosis.
    And, given this is described as a 'typical case', why put the pelvic pain so front and centre? Why not muscle fatiguability instead?

    This poor young woman has an intermittent neck.

    There's a diagram that tells us that the trigger causes an immune response with an arrow to a box with "Brain, spinal cord, nerves, hormones".

    This is good:
    But there is nothing to explain what PEM is (and apparently it is something different to 'symptom exacerbation in response to stressors such as physical or mental over-exertion).
     
  4. strategist

    strategist Senior Member (Voting Rights)

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    This kind of advice seems to me better than the alternative of the patient going undiagnosed or getting a conversion disorder diagnosis. But you could criticize some of it for lack of reliable evidence, especially the treatment advice.
     
    Last edited: Dec 4, 2019
  5. Hutan

    Hutan Moderator Staff Member

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    Gosh, it appears that the writers have information about the biological changes underpinning the symptoms! Clicking through to the recommended primer for clinical practitioners, we can read that, for example,
    Because, of course, we can't just say, there's no good evidence for anything much yet.

    The link for a summary of current research is to a write up by Dr Vallings of the 2015 Invest in ME conference. It's a grab bag of all sorts of statements good and bad. I think if you are going to direct GPs who are only just learning about ME/CFS, you need to curate the research you give them with more care. Examples of the information given:

    Bansal: He explained how fatigue occurs in many illnesses, but is the cardinal feature of ME/CFS. He said the post- exertional malaise is hard to explain..... (it isn't explained)
    Fewer than 10% patients can tolerate alcohol.
    Another unusual sign in 60 % patients is altered pupillary reflexes (alternating dilatation and contraction while a light is shined) and sighing respirations.
    However chronic anxiety associated with ME/CFS will deplete energy further, contribute to faintness, cognitive difficulties and increased respiration.
    Quite often it is a difficult question of how far to delve into issues such as life events, stress, physical injuries, environmental toxins and childhood trauma as there is at least some evidence that they may all play a cofactor role in precipitating ME/CFS.

    Jo Cambridge:
    In ME/CFS there were positive results from use of rituximab in Norway.

    I could go on, but the point is, these are links with some information that is out of date and some information that was wrong even back when it was written. They will confuse rather than enlighten doctors.
     
  6. Hutan

    Hutan Moderator Staff Member

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    You are right of course Strategist, but 'not getting a conversion disorder diagnosis' seems rather a low bar.
     
  7. Hutan

    Hutan Moderator Staff Member

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    This is great:
    This is not:
    We discussed the 'Finnish study' here. It is disturbing that the authors of this case study thought that B12 study was worth providing as evidence.
     
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  8. Hutan

    Hutan Moderator Staff Member

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    Screen Shot 2019-12-04 at 8.57.16 PM.png
    So yes, could be a whole lot worse, could be a whole lot better. I don't think it is worth recommending to doctors.
     
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  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I have not read through but this sounds symptomatic of something to steer very clear of - the message that 'those experts know all about ME/CFS and you can too if you do a quick session here and get brownie points.'

    The mention of positive ANA without overt arthritis is typical of not understanding autoimmune rheumatic disease. Lack of overt arthritis has nothing to do with the significance of an ANA. Lots of things here, like 'complex patient' are effectively 'nudge, nudge, we've all seen that before haven't we'.
     
  10. ladycatlover

    ladycatlover Moderator Staff Member

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    I find it odd that they didn't appear to follow up the positive ANA in any way.

    So a positive ANA isn't a significantly abnormal blood test? If I had a positive ANA I'd want that following up rather more than appears to have been done here. But then I'm a raving hypochondriac of course with catastrophic illness beliefs. ;)
     
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  11. Gretel

    Gretel Established Member

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    Do like the format but overall it feels like a somewhat skewed grab bag of symptoms, and a promotion for Ros Vallings. The two day thing at the beginning is a bit derailing. A few good things but a glaring hole where assessment for orthostatic intolerance should be. The advice for a couple of pinches of salt is something that is often given - even without assessment - and it just not good enough.
     
    Last edited: Dec 4, 2019
  12. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    I think there are also some good points in here.

    Perhaps if you write a critique of the things that are bad and send it in name of a patient organisation, they might consider changing it a little. Was thinking mainly of the things you said @Hutan: 'complex patients', emphasis on pelvic pain in what should be a typical case presentation, the weird two-day history, inappropriate advice on supplements, claiming that "Fatigue severity declines when patients stay within energy envelop" presenting Vallings as the expert and referring to her summary of IiME conference etc.

    I think it could be a bit simpler and more professional but it seems like a positive sign that they want to bring out information on ME/CFS for healthcare professionals.
     
  13. Hutan

    Hutan Moderator Staff Member

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    That's a good idea Michiel. Something to work on.
     
  14. rvallee

    rvallee Senior Member (Voting Rights)

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    On the one hand it's not all bad. It's not particularly good either. It does not effectively communicate the severity of the disease and has way too much focus on fatigue and "other fatiguing illnesses". Moving forward requires letting go of this failure, this isn't good enough.
    I'm so tired of this. No, it does not bring "relief" to have a discriminated diagnosis. It would if there were competent support but there isn't so no, not relief. We don't want "an" answer, we want the right answer, the one that will bring the necessary help and support, treatment or a cure.

    The treatment and goals downplay the life impact. It presents it as something like a broken leg, where you can do most of the things you want, just much slower getting there. Zero mention of disability, likely because it is systematically rejected. For most patients disability is the single most important form of support because everything else is inadequate. With competent medical care this wouldn't be the case but nonetheless those are the facts.

    I do appreciate advising patients to bring notes and for the physician to accept it as necessary. This is normally forbidden, marked down as evidence of "somatization", and a serious impediment to any form of support. Most of the time I did this it wasn't even read.

    Discussion of PEM misses the mark on it being solely about energy. If only it was just that. PEM is hard to explain and identify but this only reinforces the fact that so much more is needed, that there is a serious need to build long-term experience and specialist services.

    No, a "bedtime carbohydrate" will not help "fatigue". Good grief.

    This is a good start. If the year was 1985. But it's about as adequate as facing a refugee crisis with doodles of tents on a napkin and a box of protein bars. ME needs specialist services and clinics, research tracks and serious efforts to overturn the disastrous nonsense of the last 30 years.
     
  15. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Well, it certainly provided relief for me. Without a diagnosis, I was expected to have the workload of someone who was fully healthy, which caused my health to suffer. With a diagnosis, the expectations were greatly lowered. Also I could read about the illness learning how to manage it better and getting in touch with other people with the condition.

    I think there are many others like me who are very grateful to get a diagnosis.
     
    Last edited: Dec 4, 2019
  16. rvallee

    rvallee Senior Member (Voting Rights)

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    When it actually leads to support or accommodations, of course. But that's not intrinsic relief, that's support. It's just very rare and the common framing is that it provides relief in itself, not because of the support it should bring. Hard to say whether that's what is meant here but it's what is commonly believed and just reinforces that misrepresentation.

    Where ambiguity exists it's important to address it. In most diseases historical context is just that, history. In ME, historical context and failure are still the status quo, it has to be addressed directly, especially while it's still the norm for physicians to discriminate openly against us. I understand that it will make a lot of people angry but overturning failure of this scale always does.
     
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  17. RoseE

    RoseE Senior Member (Voting Rights)

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    Any preference @Hutan if we approach this as a MECFS Canterbury activity, or perhaps as a M.E. Awareness NZ activity /with a national spin?
     
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  18. Hutan

    Hutan Moderator Staff Member

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    No preference and it probably doesn't matter, maybe depends on whether we can find someone in the medical profession to help champion it, and who they are? I'm happy to write up something.
     

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