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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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ME/CFS Primer for Clinical Practitioners

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

  1. WillowJ

    WillowJ Senior Member

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    that's a really fascinating question

    identification of African Sleeping Sickness is described but doesn't seem to have a formal case definition. But that's a much simpler disease - find type of germ: you have it. Similarly, bacterial meningitis describes looking for microbes but doesn't seem to have a formal case definition. Interestingly, they link to a WHO manual for techniques. Post-treatment Lyme Disease also links to external resources, these not from any type of government body.

    I also cannot find case definitions for diabetes (though that section is quite large so I could have missed in, and this would be taught in medical school so not too much need to go look it up), or Bovine Spongiform Encephalopathy (Mad Cow Disease, which would be less familiar even though likely covered in med school, so there would be a genuine need for HCP education).

    So yes, it doesn't seem to be necessary to have a case definition. It's just that CDC hosted the Fukuda (and maybe organized the International update) and supposedly operationalized it with Reeves 2005, and feels proud of their achievements.
    Ember likes this.
  2. lnester7

    lnester7 Seven

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    Crazy Idea.

    Prep work: List things that need discussing and that can be presented as recommendation by community.
    Prioritize List, Estimate time per task.

    1) We make a list of all the people we consider CFS specialist even w different views.
    2) Present the prioritized list of issues we consider only specialist can help with: Maybe case definition/ name/ primer review/ Owner of disease.
    2 b) This can be loaded and given in advance in a collaborative place for CFS specialist where the discussion can start.
    3) We COORDINATE getting this people on webminar (less cost) or in a room (if we can find the Funding).
    4) Get mediator and present the subjects, they will not all agree but there is major acceptance of certain things. Capture those, and other issues in a voting process. Those with quorum move on to be presented to CFSCA as recommendation petitions. ALREADY w most accepted views from "knowledgeable people".

    Then they can do education and present materials to the "not knowledgeable".

    WE need to take the lead on making the facilitation of making this things happen.
  3. WillowJ

    WillowJ Senior Member

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    Do you mean people who know a lot about ME/CFS and study it carefully (specialists) with various perspectives (ME/CFS is neurological, immune, autoimmune, viral, retroviral, multisystem, mold poisoning, cardiovascular, etc.)

    or specialists with advanced training and board certification in fields we feel are relevant to ME/CFS (neurologist, immunologist, infectious disease, pulmonology, sleep medicine, endocrinology, cardiology/electrocardiology, sports medicine/physiology [or whatever Staci Stevens, Mark VanNess, et al. specialize in], genetics, epigenetics, cellular medicine, rheumatology, and so forth) even if they themselves don't know much/anything about ME/CFS?

    because it is the latter people that the government agencies at CFSAC want involved in decision making. They feel the former are basically 'fanatics' for having views that no one else holds. Which is patently unfair, because it is the very government agencies themselves who have caused the former to appear to be on the outside fringes, by deliberately choosing to promote/publicize/consult/collaborate with only the (bio)psychosocial school and exclude/belittle/whitewash/drown out with broad unscientific inclusions, the evidence from the bio(psychosocial) school of the former.
    CJB and alex3619 like this.
  4. WillowJ

    WillowJ Senior Member

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    by the way, I don't mean to knock your idea, 7. There might be other problems it could solve! :)
  5. lnester7

    lnester7 Seven

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    Have u ever seen a tough contract negotiation: Point number one. Don't agree, move on to point number two. ...Sometimes the facilitator moves on through thousands of pages and only get agreed on one page, that is consider progress. There is a lot that a lot of them agree on, enough to get quorum on certain things. But while we don't have all the players that are publishing on CFS right or wrong communicating and collaborating we are not going to move on.

    As a community we need to agree on something. Maybe we don't agree that is immune or neuro decease but can we agree in what the disease is not? Or that is multisystem decease? If you get a room w Klimas, Chenney, Chia, Montoya and so on w Wesly (the psychological guys) and they debate based on the Studies published so far, what do you think it would happen??? How can they publicly debate on the immune, MRIs and protein findings??? Vs the PACE / GET ??? I think the immune/neuros people would win hands down even if they dont agree what started what, or who came first, they can prove the abnormalities.
    WillowJ likes this.
  6. WillowJ

    WillowJ Senior Member

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    a public debate would be brilliant! If we could get specialists and GPs/PCPs to listen to it, that would be awesome. And social services, the media, etc.

    by the bye, have you seen the NIH State of the Knowledge conference? I saw some of it, and there was some of that going on (not too many bad psychs, tho). But I'm not sure how wide the audience was. Can be found here
  7. lnester7

    lnester7 Seven

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    Yes correct !! the difference would be WE drive. Our agenda our objectives to solve the issues that most impact our community.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I haven't read the whole doc yet, but I am absolutely sickened that they are foisting exercise on bed-ridden patients and implying that it will always increase their 'functional capacity.' There is NO excuse for this garbage; it KILLS ME patients. Patients got them the $10K from the Chase contest to write this doc. They need to change this immediately. Haven't we suffered enough from friendly fire?

    I have written the authors of the Primer at admin@iacfsme.org. I urge you to also.
  9. Mark

    Mark Acting CEO

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    I have read the whole document, and I've reviewed the sections regarding exercise after reading your post, and I'm unable to understand what you are referring to here. You do not quote the section(s) you object to; if you will do so, we can discuss your objections. The section, under Treatment, regarding activity and exercise is on pp 20-22, and the most relevant text is as follows:


    This last paragraph is the only part of the primer I can see that refers to exercise for bedbound patients, so I can only assume this is what you are referring to. But I can't guess what you object to in this recommendation that there may be benefit from 'gentle stretching, lying down, for intervals of 90 seconds or less, not to be repeated until complete recovery has occurred, and not to be increased unless/until the stretching exercises do not trigger postexertional symptoms, with resistance training only beginning if functional capacity 4-5 is reached'. Perhaps it's the perceived implication of the "when" in this text that you object to; perhaps you're reading it as suggesting that progression through these stages is normal or inevitable with this treatment alone, but if so, you're completing mis-reading the text and should read the whole document before commenting.

    I agree with these words, but I'm not reading them as applying to the authors of the primer...

    And I urge you to read the primer first before writing to the authors about it.
    taniaaust1 likes this.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I read the part you posted. I still have serious problems with it. I don't think it's necessary to read the whole thing before commenting. I think many doctors will have "CBT/GET" in their heads from the constant Wessely et al., CDC, etc. drumbeat of it and will go straight to the exercise section and not read the entire document at first, if at all. There are some mitigating and good stuff in here, but also pretty bad stuff, imo. I am busy with a move now so will have to get back on this.
  11. mfairma

    mfairma

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    I fully agree with Mark on this.

    First, to criticize the exercise section on the grounds that it gives fodder to the "CBT/GET" crowd is to completely lose focus of the importance of this document, which strongly demonstrates the physiologic origin of ME/CFS and forms a valuable resource for ignorant practitioners willing to learn. In at least that respect, I think it would be unwise for the community to be too critical of the IACFS/ME's work. This primer is a long time in coming and represents an excellent first stab at opening this illness to new doctors. We should embrace it and look to more proactive engagement.

    Second, the document states very strongly that post-exertional malaise is a fundamental part of ME/CFS and gives recommendations on how patients may integrate a very low level of exercise into their lives. To criticize such a narrowly-tailored section on exercise only enforces the orthodoxy that ME/CFS patients cannot stand any form or degree of exercise. While aerobic exercise is clearly harmful to ME/CFS patients, it seems clear that some degree of light anaerobic interval exercise can be tolerated. Dr. Klimas and Dr. Lapp have promoted as much, among others. Further, I and other patients I know are able to engage in some degree of interval activity, however limited, so long as we use heart monitors and keep to a strict schedule of brief exercise followed by long periods of rest. So, given that interval exercise is possible in this illness (at least for some patients), I think it would be unwise to eliminate discussion of exercise just to avoid the appearance of suggesting that GET is good. Further, I do not read in the IACFS/ME any suggestion that exercise will cure patients, so I think it's reasonable to assume that this primer will not reinforce the "incorrect illness beliefs" of those who think that GET leads to recovery in ME/CFS. I do read in the discussion the belief that exercise is important, if possible, to prevent deconditioning, but that seems like a pretty reasonable belief.
  12. ukxmrv

    ukxmrv Senior Member

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    What about those of us who cannot tolerate even light interval exercise with heart monitors, mfairma?

    I'm one of the original ME patients and totally intolerant of exercise even under the situations that you describe. Although Klimas and Lapp have spoken about the use of exercise in their patients, as far as I am aware there is no published research (al la Light or Stevens) that shows the effect of their regime on clearly defined ME (under any criteria) patients.

    What Kilmas and Lapp describe may be applicable to one group of CFS patients but who knows what even the exercise that they describe is doing to your body. It may be causing long term harm that even you or they don't know about yet. We need proper evidence to support this or it needs to go from the primer.

    In the UK one of our patient associations argues that exercise should be evaluated like any drug prescribed for a disease. Just because one maybe small and specific group say that they can tolerate a small amount of exercise under specific conditions means little when so many ME patients cannot tolerate it at all.

    Including exercise based on anecdotal reports or a recent program (such as Klimas) is to me irresponsible and certainly not evidence based. We do potential harm to patients who are exercise intolerant and this doesn't even follow the work by Melvin Ramsay on his ME patients. When there is a huge red flag like that we need to stop and think carefully.
  13. biophile

    biophile Places I'd rather be.

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    It makes sense that we keep as active as possible within our individual limits, but I think this should be aimed at activities of daily living, not exercise for the sake of exercise. The primer even states that exercise should not induce symptoms flares nor take priority over activities of daily living. It is difficult to understand how a severely affected patient could do any such exercises without interfering with activities of daily living, thus rendering the specific recommendations inapplicable.

    The recommendations for severely affected patients may sound reasonable to outsiders but in reality could be just as inappropriate as cycling or even walking is for moderately affected patients. As ukxmrv suggests, we need more evidence. I've never been completely/strictly bedridden for prolonged periods ie weeks, so I cannot speak from experience there. However, I have observed that the more severe I am or the worse the post-exertional state is, it becomes exponentially easier to exacerbate symptoms (both immediate and delayed) to the point where even the most trivial activity taken for granted by moderately affected patients suddenly becomes a significant problem.

    The primer gives multiple important caveats but there is still a hint that 'exercise is good by default and just needs to be tailored to the patient', a prevailing attitude in the medical community, apparently not just by the likes of Wessely et al but also Lapp/Klimas et al. I've been through enough exercise-babble and deteriorations to know that I should focus my efforts on activities of daily living, not exercise for the sake of exercise.
    jimells likes this.
  14. Valentijn

    Valentijn Activity Level: 3

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    The section on exercise showcases the thought process that exercise is ALWAYS beneficial. They think the trick is just to work out how much to do and how to do it.

    My main problem with talking about exercise for home- and bed-bound patients is that they probably have an extremely low threshold to start with, and that exercise is almost certainly coming at the expense of other activities. I would much prefer a recommendation to send in an ergonomic therapist to help the patient figure out how to do more with their available energy. Then they'd at least be doing something productive while risking a slow-motion crash.

    Which ties into the other problem - doctors and therapists not really understanding our limits or why we crash. Seriously, someone at level 1-3 staying under 90 second intervals? They are off by at least a factor of 10. Some days I do a grand total of 5 seconds of leg lifts if I've been very inactive and my legs feel up to it. And that is as much as I can handle without pushing it. Laying down does not make a difference for my PEM at all.
  15. Andrew

    Andrew Senior Member

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    The primer is now available in print format.

    Book Size: 8.5" x 11"
    Binding: Spiral Bound
    Price: $15
    Source: TheBookPatch.com


    Little Bluestem likes this.
  16. jimells

    jimells Senior Member

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    An early post mentioned that the committee took two years to write a basic 30 page (plus references) document. It is extremely discouraging to think it took so long.

    I brought a copy to my PCP, who has taken on management of the illness. None of the numerous 'specialists' will touch it with a ten-foot pole. She skimmed through, seemed to be familiar with most of the material, but didn't want a copy. But she did prescribe trazodone for sleep, perhaps she saw that in the primer.

    I was disappointed by the overall direction of treatment recommendations, which seem to support the idea that treating a few obvious symptoms (sleep, pain, etc.) is all that can or needs to be done. It's quite clear from the experience of many folks on this forum that treating surface symptoms is only a start. Now that other diseases have been ruled out, the attitude of my PCP is to do as little as possible. Meanwhile I keep telling her that my bank account and my functional capacity are slowly but steadily headed for zero.

    The reality is that for most patients, we and the GPs are stuck with each other. The few real specialists might as well live on the moon, since most of us will never see them; the neuros, endos, and rheumys won't treat us or consult to the GPs.

    The Primer desparately needs useful (as in, 'can be acted upon') discussion on advanced/experimental treatments, and especially the diagnostic tests that suggest which of those treatments might be appropriate. Maybe it could start by including a part of, or a reference to, Dr Lerner's "ME/CFS Treatment Resource Guide For Practitioners"

    There is more discussion of Ampligen (along with the caveat that it's not generally available) than of Lerner's work, even though the treatments and tests he uses are actually available now.

    Unfortunately a section on cortisol (which I found extremely interesting and maybe very important) is buried in Appendix E (Recommendations for Surgery). I'll bet dollars to doughnuts few people have seen that discussion. Section 3.2 mentions 'mild hypocortisolism' but there's nothing under Section 5 (Management/Treatment), where a clinician might actually see it and perhaps even act on it.

    Overall I think the Primer is a good start, but I can't wait another two years for a more inclusive edition. And I know there are thousands of patients in much worse condition than I.
  17. taniaaust1

    taniaaust1 Senior Member

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    I feel bad adding another critisim about this document but when I see recommendations like this I have to go "What rehabilitation professionals knowledgeable about ME/CFS?"

    Maybe its different in other parts of the world but here in Australia I havent ever come across even one rehabilitation professional who was all that familiar with ME/CFS.. well not enough not to cause me harm.

    I did see a physio one time who reassured me she was experienced in ME/CFS as she'd previously had a couple of others with this.. but I actually got harmed on the very first exercise (within 1 min.. I'd been harmed) she had me do just after coming out from a long bed bound period (was in agony for days as it was like I tore something on that one exercise).

    As rehab professions arent being trained in our illness either.. well where do we find ones knowledgable about it? What they recommend here just isnt available.

    I think we do need ME/CFS specialists who are trained in all aspects of this illness including in rehabilitation and used to dealing with many who have our illness. (the one who tried to help me thought she was knowledgable just cause she'd had a couple of ME/CFS people before me.. obviously thou they werent as bad as I was so she thought the so called easy exercise program she was going to get me to do was safe for me . I had told her that I was only just completely out of a bed bound stage too).

    Another experience I had with this rehab thing.. is they had a weekly group they wanted me to go to.. rehab (physio working with one) and it was also social as everyone would have lunch together. I was so buggered from just the travelling that I just layed on the ground and did nothing while others did the rehab.. when it came time for eatting.. I couldnt even use a fork as my hands were spasming so much due to overdoing it cause I'd travelled a short way (so spasming hands caused food to go all over the table and my food was almost getting over others). I then was almost crying (it was so embarrassing trying to eat with a fork which was causing my hands to spasm even more). Phyiso just told me not to worry about it my food going everywhere (if she knew anything about our illness she would of encouraged me to eat with my hands at that point instead.. i was embarrassed so tried to persist with the fork, which kept on stabbing myself in the side of mouth and face and ended up having to give up on eatting and go hungry)
    ***sighs** she didnt understand that just holding a fork was worsening me, too much. Then to top that off.. she tried to encourage me to come again saying it would be good for me.. .. NO WAY!

    Rehab people truely dont have a clue when it comes to us.. they dont understand that activities (even holding a fork) could be making us worst. The best thing which can be done for the very sick, is to give them ideas in how to do the things they do in an easier way.

    If Im bedbound and bad **fingers crossed I wont get that bad again**.. just moving me, touching me or even just moving around me without touching me, can actually make me worst. I havent read the whole primer so I dont know if it mentions those who even touch and being spoken too can make worst. With the extremely sick, contact needs to be kept minimal.. the persons needs always need to be listened too.
    Valentijn likes this.
  18. lnester7

    lnester7 Seven

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    I also feel there was too little information on Dysautonomia or OI.
    taniaaust1 likes this.
  19. Andrew

    Andrew Senior Member

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    More than year ago I poured over summaries of research on CFS and various medications. I was expecting to find a hidden gem. I came away disappointed. But I had found a few things that were maybe worthy trying. Showed them to my doctor, but soon realized he really not into using medications in an offbrand way. So that did no good. But a different doctor offered anti-virals. But then he used standard medical conventions and tests to support the way he used them. I ended up on anti-virals for a short time, and when I was not better after a short time he stopped them. This is not how Montoya or Lerner work.

    I'm really not sure how much a primer can do. I mainly see them as manuals to keep doctors from making us worse, and hopefully make things a little easier on us.
  20. Aileen

    Aileen Senior Member

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    Maybe it's time we started writing our own manual. This forum is a first step actually. I'm finding help at the moment working through the mast cell area. Many are sorting things out in the antiviral section. That could fall under "projects" for this site. Also getting a lot of help figuring out what tests to ask the dr for and how to interpret the results but find it a bit difficult in that the info is scattered all over.

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