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Time for the Big Talk. How's the CAA doing?

Discussion in 'General ME/CFS News' started by hvs, Oct 26, 2009.

  1. Koan

    Koan Be the change.

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    I know, Teej. We know Dr Donnica is far more aware and enlightened regarding ME/CFS than your average doc and yet she cannot overcome what she has been taught about exercise. I really do not see how we can expect your average doc. to fare better. This is exactly the problem.
     
  2. Mithriel

    Mithriel Senior Member

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    Quite right I did :Retro smile: I have never got my head round them having to change their name from MERGE.

    I was even part of the research! I have an abnormal reaction to acetylcholine, it carries on having an effect when it should have cleared away.

    Mithriel
     
  3. Dolphin

    Dolphin Senior Member

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    And an interesting thing is they found that this wasn't present in those with Gulf War Syndrome those with a history of ill health after definite organophosphate exposure: http://meresearch.org.uk/research/projects/methacholine.html

    And it was all done on a shoe-string budget - don't know exact amount but all their studies then were under 30,000 pounds - and the ones at Dundee tended to be less again.
     
  4. starryeyes

    starryeyes Senior Member

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    Well we can start by having good CME materials for the doctors. They have to take CMEs to keep their medical liscences up to date. I think PWC would be surprised at how fast changes would happen with their doctor's attitudes towards them and treatment for CFS if the CAA's CMEs were corrected to show the truth about CFS.

    This is interesting Mithriel and Tom:
    http://meresearch.org.uk/research/projects/methacholine.html
     
  5. Robyn

    Robyn *****

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  6. Cort

    Cort Phoenix Rising Founder

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    Dr. Cheney

    Actually its much worse than Dr. Donnica. Many of the physicians we know appear to be totally off their rocker with regards limited exercise for CFS patients.

    http://www.prohealth.com/library/showarticle.cfm?id=3157&t=CFIDS_FM


    Dr. Cheney

     
  7. Koan

    Koan Be the change.

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    Hey Cort,

    In the interest of fairness the above was not written by Cheney. From the link provided:

    So, it can more fairly be attributed to Carol Sieverling than Paul Cheney and is more than ten years old.

    Peace out,
    k
     
  8. Cort

    Cort Phoenix Rising Founder

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    Dr. Klimas, Dr. Levine and Dr. Bateman on 'exercise'

    I'm not trying to jam this in anyone's face. I understand the worry about talking about 'exercise' - that it will be misinterpreted. One way to combat the misunderstanding about exercise and CFS, though, is to overcome it with information. That's what these physicians are clearly trying to do.

    I'm just trying to point out that these are very mild programs; they simply attempt to keep a patient conditioning as maximal as possible within the framework of their illness. They are not saying exercise will cure CFS and they are careful to state that it can do real harm - as anyone with CFS is obviously aware. They all propose something very similar to what is presented in the CME program.

    But they are very clear that very mild exercise - when its appropriate and does not exacerbate symptoms - is helpful. I personally do not think these are very bold statements. I think they're common sense statements. I don't anything we should take umbrage at. It makes sense to me that very mild 'exercise', to the extent that you can tolerate it, is helpful. That has been my experience.

    The problem with 'exercise' and CFS is that other types of exercise programs have been shoved down CFS patients throats. These are not them. These are very mild. If every doctor felt like these doctors do - we'd all be in alot better shape.

    Each one has been practicing for many years and each one has seen thousands and thousands of patients and each one is highly regarded in the community.

     
  9. Cort

    Cort Phoenix Rising Founder

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    I think everybody realizes that Carol Sieverling has written volumes on Dr. Cheney's practice over the years and that he checks over her stuff - if you can't trust Carol who can you trust? That's Cheney and that was after he'd been practicing for how many years? 17 years on CFS? That's Paul Cheney right there.
     
  10. Orla

    Orla Senior Member

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    Hi Teej,

    I wouldn't want exercise to come up either, as there is not question of me having enough energy for it when I am struggling with basic tasks. Unfortunately Bateman suggests to doctors bringing it up at every appointment [my emphasis in bold]:


    :eek: :eek: :eek: :eek: And that is on the IACFSME website.

    I would not be happy if my doctor did this. I am already at my threshold, and sometimes basic things I have to get done cause me to overdo it.

    I think there is a contradiction in the thinking above. On the one hand there is a recognition of the patients having a threshold, on the other there is an idea that patients can do more over time and that they can increase their conditioning.

    Most patients are already doing as much as they can, or as close to it as makes no difference (the severe in particular will be maxed out doing basic things). Most need to be encouraged to restrain themselves, not try to increase conditioning (which would involve doing more, presumably, by definition).

    Orla
     
  11. Cort

    Cort Phoenix Rising Founder

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    Dr. Bested and Alan Logan on "Exercise"

    from Hope and Help For Chronic fatigue syndrome and fibromyalgia by Alison Bested and Alan Logan

    I'm not trying to discount anybody's experience but I do want to point out that the exercise prescriptions in the CME are very similar to those found in other documents by physicians that are well respected in the community. I'm trying to put the CME program in the context of other physicians prescriptions.

     
  12. jackie

    jackie Senior Member

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    Teej and Orla...i agree, and I'm NOT happy when they DO suggest this...which btw - (as i see one or more of the three docs i have at least every three months sometimes more often...and that's not including the odd cardiologist now and then) is, well...EVERY three months! every three months (maybe less) we do this same dance! (Excluding, of course, my I.D. Doc who knows better)

    They dutifully question me and suggest the same stuff..i wearily reply with the same yada,yada,yada answers (excuses, I'm sure, to them)

    (Maybe if one of them gave me a gold sticker or a sucker or something...along with their "praises" for trying a little harder....?)

    j
     
  13. Cort

    Cort Phoenix Rising Founder

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    Bruce Campbell on "Exercise"

    from "The patient's guide to chronic fatigue syndrome and fibromyalgia" by Bruce Campbell

    This is very similar to all the other programs. These are just snippets of it. If the time is not right for discussing exercise, then its not right.......but at least we can say that the CME is but not unusual in its ideas and they are similar those found by the respected people in the field. I'sure that I've infuriated everyone! Oh well!

     
  14. gracenote

    gracenote All shall be well . . .

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    I think we ought to get a gold sticker and a sucker just for LIVING WITH this maligned disease!
     
  15. Dolphin

    Dolphin Senior Member

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    The main point to learn from this is that if you just have Northern American doctors coming up with guidelines, you may come up with problematic (in my mind) guidelines.
    UK doctors don't all recommend exercise.

    Dr. Martin Lerner only recommends exercise when you get to 7 on his scale http://www.cfsviraltreatment.com/energy_index_score/index.html (which is high functioning):
    Aside: This is a full-time job, as this is point 6:
    I think Dr. Campbell's program is mainly a pacing program.

    Prof. Jason recommends energy envelope and pacing methods and pacing methods came out better than the exercise intervention in his 2007 trial.
     
  16. Cort

    Cort Phoenix Rising Founder

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    What I think I have missed all the exercise that I've done is that I don't do this:

    I don't gradually push toward but not over my threshold. I usually go over my threshold when I exercise. I rarely use the energy bank idea. Even when I don't overdo it think I rarely leave anything on the table - I don't leave anything to build up with.

    With things like strength conditioning I'm too freaked out about it to even try but when I did try I would do things like 10 reps with a 5 pound weight several times over say 10 minutes. My muscles would just freak out - it was ridiculous. But what if I REALLY took it slowly - just a couple reps every couple of minutes. Would I have more muscle tone? I'll bet I would.

    I imagine that few with people have done this with the kind of discipline and slowness it requires. Even now after thirty years I still want to go for the burn when I exercise! That's like hardwired in me.

    Bruce Campbell also notes, logically, that many people are going to have to give up other activities in order to do this kind of stuff.
     
  17. Orla

    Orla Senior Member

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    Exercise Vs pacing

    Hi Cort and all,

    I would have a problem with parts of all of those comments on exercise. I have seen more recent stuff by Cheney making very strong warnings about the problems with exercise.

    The problem with promoting exercise is that I don't think it works (based on looking at research and talking to hundreds of patients, maybe more). And most patients are alredy pushing it, and either cannot exercise at all, or cannot exercise and carry out activities such as work, caring for their children and so on. There is also the problem that once you put the idea into patients heads that they can improve through exercise, it tends to be something of a recepie for disaster.

    I feel myself that there is a US/UK difference on this issue (I am talking about the good doctors here. Before anyone has a heart attack at what I am about to say, I am not from the UK).

    In the UK exercise intolerance was always emphasised as a cardinal sign of ME/CFS. Pacing has generally been recommended by the doctors who are good on ME/CFS. So patients can increase if they feel able, but the idea of exercise in itself as therapuetic treatment is generally not promoted by the good knowledgable doctors. The UK doctors are often more critical of graded exercise and know that the deconditioning stuff is unproven (and that there is evidence against it) and that the push to get patients to exercise to improve originally come from the CBT/Psychiatric school.

    But my impression of some US doctors after watching talks and reading some of the literature is that many US doctors who are really good on some issues are quite poor on the exercise ones. They often suggest exercise where the UK doctors would not (and the UK ones would stress pacing.) I think there could be a few reasons for this (some of this is pure speculation on my part).

    They might read about Eurpean studies which allegedly found graded exercise to be helpful, but didn't understand that many of these studies use very loose entry criteria (Oxford), for example.

    And maybe the doctors in the UK, knowing the characters who are involved in the studies, are more wary of just taking the alleged results at face value and maybe they are inclined to be more questionning and dig deeper, and basically have a closer look??? There are specific people like Ellen Goudsmit PhD (a psychoologist with ME herself) who have done a lot of work in this area. Also some of the more vocal people in the UK are doctors, psychologists and the like who have the illness themselves so that might add to it also. They read a lot of the literature but having the illness also means they have personal experience.

    Of course you do have Leonard Jason in the US. But I have not seen a lot of good doctors in the US advocate Pacing and be very good on the exercise issue. I do remember seeing a talk by Chia and he said that one thing he looks for is exercise intolerance in order to help him diagnose. I cannot remember exactly what he said now, but I remember thinking that it was exceptionally strong and good on exercise for a US doctor (he has a son with the condition).

    One more thing is a lot of the US doctors seem to think Fibromyalgia and ME are basically the same, or very similar. I think this view is less common in the UK. Fibro patients do not necessarily have exercise intolerance (not the way we do) and some may even benefit from some exercise.

    And I have often wondered if many of the US doctors see severe or very severe patients regularly because of the sorts of recommendations they seem to make. I think people were also thinking this about Bateman which is what led to some people asking whether Bateman saw severe patients (and one might have to see them regularly for their experience to impact on one's thinking). It was not a personal attack. It was because people read what was in the CME about severe patients and it just didn't fit their experience or knowledge. I have often wondered this myself from listening to what some (very good in general) US doctors have said.

    And just in case I have wounded people in the US, on the other hand I think many US doctors are very interesting on testing for things likely to be abnormal in ME. (This may be partly because the US healthcare system is more privatised and the UK one more public so they are very restriced in the UK).

    Anyway, just a few thoughts,

    Orla
     
  18. starryeyes

    starryeyes Senior Member

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    That's disheartening Orla. I know my doctor has been told to say it because it makes no sense for him to say it at every appt. after I have thoroughly explained my situation.

    Do we have any doctors or organizations that actually get the problem with Post Exertional Exacerbation of Symptoms in ME/CFS?
     
  19. Cort

    Cort Phoenix Rising Founder

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    Dr. Enlander on ' Exercise'

    from I'm Fatigued. Is it a syndrome? CFS Handbook by Derek Enlander

    Even Dr. Enlander, one of our foremost advocates for physiological research, and a doctor who relies heavily on immune treatments as an exercise section in his little book:

    By the way, while we're speaking of exercise, I really recommend getting a voice activation system. I have Dragon's Naturally and, honestly, I've had a ton of difficulty getting it to work but its now working now it just whips this stuff out. I am literally simply speaking into the microphone the sentences are flying out. I would never have been able to write all this down - it would have been exhausting! :cool: When It works it makes it so much easier to communicate- then you can use your energy for other things.

    Dr. Enlander goes further than most physicians, I think, and note that he says patients who are able to exercise but he still has still has this section in their and he notes that capacity varies greatly.
     
  20. Dolphin

    Dolphin Senior Member

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    Looking at those names and other professionals I people I consider "very good" on the energy management issue e.g. Dr. Charles Shepherd, Dr. Ellen Goudsmit, etc, I think panels drawing up management guidelines should ideally be made up of lots of patients incl. professionals who are patients!
    People who live with patients are often good as well e.g. Dr. Weir.
     

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