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ME/CFS Primer for Clinical Practitioners

Discussion in 'General ME/CFS News' started by Ember, May 16, 2012.

  1. Andrew

    Andrew Senior Member

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    Well, if anyone wants to attempt a lay manual, feel free to borrow whatever you want from the pdf in my blog post. Or, if you have any ideas for me to improve what I did, let me know.
    Little Bluestem likes this.
  2. Dolphin

    Dolphin Senior Member

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    Perhaps not exactly the same thing, but I recall the American Journal of Medicine had two opinion pieces giving alternative views:



    (I can't find that online but think it may be similar to this:
    "The Physical Basis of CFS"
    http://www.cfids.org/archives/2000rr/2000-rr2-article01.asp )

    The problem with this was it gave Peter Manu a platform to spout psychobabble. I think a lot of people can be influenced by psychobabble/psychological hypotheses once they hear them so I think it can be a problem giving people a platform.
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  3. Dolphin

    Dolphin Senior Member

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    I can't remember if it was highlighted but the IACFS/ME website says:
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    The IACFS/ME newsletter said:
    --

    --
    So it looks like they should be open to comments and it would be good if people sent in comments. I think a revised version could be useful.

  4. WillowJ

    WillowJ Senior Member

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    that's a good suggestion
  5. Dolphin

    Dolphin Senior Member

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    Here's a draft of what I'm thinking of sending in. I think I'll sit on it for a day or two in case anything occurs to me. It's also a bit of a ramble so perhaps I might be more willing to put effort into the wording.

    (part 1 of 2)
    <various praise>

    The severely affected are a very vulnerable group: they likely depend on others accepting how ill they are if they are not to deteriorate.

    The others they depend on can vary: quite likely if they don't have the support of a medical doctor, it will cause them a lot of problems, in terms of getting financial supports (which they very likely will need as it's unlikely to be able to work) and also possibly other sorts of support, from other medical and care professionals. Also if a medical doctor is not convinced of their disability, the doctor could influence people around them (partner, parents, etc.) (Although some people won't even have family to support them).

    It doesn't "suit" people for somebody to be severely affected. People around them would much prefer if they were less dependent on them and more able to help themselves and contribute to the household. And medical and health professionals would prefer not to have to do home visits, write reports in support of the patient, etc. Also it goes against almost everything one is told i.e. being sedentary is bad for people's health. It can freak people out as being horrific and people can go into denial that somebody can be so unwell with an "unexplained" illness which doesn't have abnormal test results.

    For somebody who is severely affected it is hard to get to the stage that people around them can accept they are as ill as they say they are. So anything that suggests they can get themselves out of the situation can be a problem as it can put the seed of doubt in people's mind that they are or need to be as ill as they say they are.

    The other thing about advice to severely affected (housebound or bedbound) patients is that there is virtually no published evidence regarding them (people who couldn't attend outpatient appointments). The FINE Trial was supposed to look at this group but broadened its intake. I recall one case study have a couple of inpatients but that is not a large number of people to depend on to make decisions on; also there could be selective reporting with plenty of other people having the therapy but their results not being reported on.

    So in this context I want to bring up what is written:

    - this suggests there will be progress. At the very least, the wording needs to be clarified that progress is by no means guaranteed.

    Similarly, the bolded bits in the extract give the impression that improvement is likely to happen, even though there is little or no evidence for such claim:
    If one wants to make different levels of suggestions, one way would be to have the activities one recommends for functional capacity rating 1-3 and then in a separate paragraph have the activities one recommends for functional capacity rating 4-5, without any suggestion that the first group will naturally go up to the higher functioning group.

    Personally, I don't think there should be talk of strengthening exercises, particularly in ratings 1-3. Daily living will most likely involve as much activities as they need.

    I think it's quite likely that strengthening exercises, and also elastic bands or light weights could lead to repetitive strain injuries and/or extra pain in people severely affected.

    Also, strengthening exercises are quite speculative for any group - they have barely been tested.

    In the one trial I recall, this form of intervention didn't come out that well:

    Talk of strengthening exercise gives impression that the weakness is due to disuse and muscle wastage. But this is very often not the case. For example, people can suddenly have a setback and feel weaker without there having been time for disuse and muscle wastage.

    Muscle weakness seems to many people to be a core part of the illness, rather than a secondary effect.
    For example, "A new onset of significantly abnormal levels of muscle fatiguability and/or muscle weakness, precipitated by relatively minor levels of activity. Symptoms typically worsen during the next 24-48 hours."
    is one part of the ME criteria in:
    People with severe ME/CFS could thus have the muscle weakness from simply having overdone it as it is so easy to do that at that level - they may in fact be continuously doing it until they improve.

    There is research evidence for this phenomenon (muscle weakness) in this paper:

    The start of chapter 5 says:

    This could even make it appear that talk of energy envelope isn't relevant for the severely affected.

    The primer doesn't talk about some speculative therapies so I don't think it needs to talk about exercise for the severely affected.If there is going to be talk of (speculative) exercise (regimes) for the severely affected, I think it would be better that it was either in Chapter 5 or Section 6.1 but not both.

    In general, I question the need to talk about exercise specifically for the severely affected. Simply doing activities of daily living tends to be all the activity they need to get to their limits. Doing exercise means they have less energy for either other basic activities such as personal hygiene or pleasurable activities and time with their family/friends. Having time to devote to family is not just good for the patient themselves but will be appreciated by those around them, especially if they have children but also a partner, etc.
  6. Dolphin

    Dolphin Senior Member

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    (part 2 of my draft comments - I thought I'd split it up to shorten each post)

    References 68 and 69 are both Fibromyalgia references, so it's slightly misleading.

    Plenty of people with ME/CFS have had problems with physical therapy, massage, hydrotherapy, yoga and Tai Chi (the latter probably mainly due to being upright) (see for example ME Association 2010 survey results http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res4.pdf ) so it might be good if this was re-worded a little.
    e.g.
    "Non-pharmacologic interventions that have been helpful for pain in Fibromyalgia include 68,69 pacing of activity, physical therapy, stretches, massage, acupuncture, hydrotherapy, chiropractic, yoga, Tai Chi and meditation (re-laxation response) and so might be useful to try in some patients"

    ---------
    I think the advice is good, but not the reason. "Stress" sounds too much like "psychological stress" something that somebody could control with being more relaxed while exams often involve quite intense mental exertion done quickly during the time of exam. Also, in the lead up to exams, people may be pushing themselves to study (mental exertion). So I think the point is good and important to make but it would be good if the reason was clarified a bit (the existence of the effects of mental exertion have already been acknowledged elsewhere so it wouldn't have to be long). It would be good if it was also mentioned that rest periods/extra time should be considered for patients as exams carry a big risk of flare-ups and relapse.
    ---------

    Random comments (probably less important):
    (i) I find the use of the word "unbidden" here unclear. A dictionary tells me one meaning of "unbidden" is "not invited or asked" but that could be said about any symptom, so I'm guessing that's not the meaning and instead it is referring to symptoms coming out of the blue. Perhaps either it could be replaced or words put near it to clarify exactly the point being made:


    (ii)
    I find it slightly odd that sedation is singled out as the side effect of alcohol - I've heard various other effects such as people feeling very ill the next day (even from quite small amounts like one or two units of alcohol)

    (iii) You may not be able to change this one but I find odd the use of "over achiever" in Appendic C (Functional Capacity Scale)
    "high achiever" might do the job. Possibly not a major point as point 10 means somebody is well - I'm just slightly concerned it might feed into the suggestion that people bring the illness on themselves, or bring relapses on themselves, by "over achieving".
  7. Dolphin

    Dolphin Senior Member

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    Just listening to a bit of the CFSAC meeting. Dr. Gurwitt is speaking. He mentioned he was involved in writing it and also now he is a member of the revisions subcommittee. I think it's a good sign that they have such a subcommittee.
  8. Dolphin

    Dolphin Senior Member

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    The IACFS/ME Primer is being translated into French, Spanish & Japanese versions and should be available soon (Fred Friedberg, in his testimony to the Fall CFSAC meeting).
  9. Dolphin

    Dolphin Senior Member

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    Dr. Gurwitt at Fall CFSAC meeting:
    Section on severely affected - has been re-written and expanded upon
    Rosemary Underhill has written it.

    Eileen Holderman asked when a revision might be available.

    Dr. Gurwitt wasn't sure - guessed it would be available in 2-3 months

    He said the section on the severely affected will be the first thing to be re-submitted for the panel to look at.
  10. Dolphin

    Dolphin Senior Member

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    IACFS/ME conference program in March:

  11. Dolphin

    Dolphin Senior Member

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    I wouldn't be surprised if Dr. Lapp (one of the co-authors) was at least partly responsible for the problematic parts in the Primer (my recollection is these were nearly all on the severely affected).

    Here's a presentation he gave in Japan in 2012 (I recall him saying similar things before):
    http://mecfsj.files.wordpress.com/2...5a8e69687hpe794a8efbc88e88bb1e8aa9eefbc89.pdf

    He seems to have a different philosophy for the severely affected: put simply, he doesn't seem to believe there's a ceiling of activity for such patients. If there is a ceiling of activity for moderate or mild patients, why can't there be a ceiling of activity for the severely affected?

    --------
    -------

    What studies have shown that even CFS patients in wheelchairs can exercise as long as they do not over-exert? I wonder has he some interpreted the CBT/GET school papers as being on the severely affected. They haven't been.

    If there is a drug, people might improve - so I don't accept that " No one ever gets better from lying around all the time"

    Why are severely ill patients being lectured like this? Who would want to accept their current restrictions if they are severely affected?

    Everyone can aim to be better but why are the severely affected in particular being lectured on this? As I said, he seems to have a different attitude to the severely affected: he is less accepting of their disability.

    ---
    Dr. Lapp is giving this presentation on the patient day which again shows his possible influence re: matters relating to the severely affected:
    Given this, it also seems likely in the main conference he will be talking about the severely affected in this portion:

    Dr Lapp is also involved in the CDC's education program:

    Valentijn, biophile and ggingues like this.
  12. lnester7

    lnester7 Seven

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    I have been in both ends, In bed and very active. YES THE CEILING CHANGES!!!! And guess what, once you are very active anything can bring the ceiling down again and you have to start from scratch to work your way up again.

    Dude when you have to rest from brushing your teeth, and just the essential in life, when are you going to exercise and recover???? Just taking a shower (ON A GOOD DAY OF A VERY SEVERELY AFFECTED) requiems hours of recovery. So if you take care of the basics, recover, eat, recover.... How many hours does a day have just so you can recover and do what you need to do to survive!!

    CLUELESS PLP!
  13. Ember

    Ember Senior Member

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    By contrast, the ME Primer advises, “Optimize functionality: Depending on severity, some but not all patients in the chronic phase are able to incorporate some brief activities into their day to assist in maintaining and improving function.”
    Dolphin likes this.
  14. Valentijn

    Valentijn Activity Level: 3

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    I did, when OI kept me from sitting up for a few weeks :D Theoretically I should have become deconditioned and weaker, yet once the OI subsided I was stronger than I was before my little lie down. Of course, that wore off after a few days of "normal" activities.
  15. biophile

    biophile Places I'd rather be.

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    Of course CFS patients in wheelchairs can exercise! (see below)

    The trick is waiting until a GET sympathizer appears, brimming with condescending optimism ...

    Start with the one-finger salute, then gradually work up to a V sign. :)

    http://en.wikipedia.org/wiki/The_finger

    On a more serious note, if you are so disabled you need a wheelchair, exercising for the sake of exercise is the least of your concerns/priorities. And if you must fall for the (usually false) hope/hype of graded activity, at least work on practical daily functions first, not on ideological-based physical exercises which waste precious resources.
    Last edited: Jan 27, 2014
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  16. alex3619

    alex3619 Senior Member

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    You can then get more aerobic activity by raising and lowering that hand sign a few times.
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  17. Valentijn

    Valentijn Activity Level: 3

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    So that's what they mean when they talk about starting GET by drawing letters in the air for the severely affected! It makes so much sense now - I'd feel better when flipping off the "therapist" too :thumbsup:
    biophile likes this.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Wheelchair cfsers could do synchronized swimming as physiotherapy and graduate to underwater line dancing????

    Treat the illness correctly as in the immune/infection issues and the physical function improves. This has happened too many even without a 100% cure.
    SickOfSickness likes this.
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Should that be Lapp dancing? :D
  20. shah78

    shah78 Senior Member

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    How can anyone read this crap! I went straight to the "DIET" SECTION: "avoid RICH, FATTY FOODS" TRY (I assume conventional)DIARY" and some" SHOULD AVOID GLUTEN". People, this is awful advice, and nobody in 59 responses has mentioned it! What are you people eating? You can not expect to cure any manifestation of CFS/FMS/ME while eating the Standard American Diet. CFS is a desease of civilization plain simple. We eat species inapproriate food, live in climate controlled houses,live withinn a EMF/chemical cesspool . What am I missing? Sure I got the "triggering infection" like most all of you. But that was thirty years ago. I had to change almost every aspect of my lifestyle to "cure" CFS/FM The doctors did ZERO!!! Why do you keep looking for them to help you? ........Second, on the same page 25. Try B12 injection with hydroxycobolomin. THIS IS PATHETIC! These people are MORONS.

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