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CAA recommends, to me, questionable article on pacing. March 2010

Discussion in 'General ME/CFS News' started by shrewsbury, Mar 4, 2010.

  1. kurt

    kurt Senior Member

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    I just want to point out that the article was written by Alex Howard and not by CAA. I don't know if CAA agrees with everything in that article, maybe they missed some of the details when they hurried to publish the March edition of Link, I can imagine with a small staff and a big schedule that is possible. So before people go off collecting sticks and stones maybe we should ask the CAA for a formal clarification here. Is this article their new position on CFS? Is the article an attempt to address a problem that they believe may be present in a subset of patients? Or did this just slide in under the radar and they did not catch the subtle implications of parts of the content, nor appreciate how the CFS audience would react? Or are they simply trying to show many different approaches to CFS treatment and the opinions in the article are not necessarily theirs? (in which case a disclaimer would be a good idea)

    Meanwhile, given that CAA in my opinion is the major research and advocacy group out there that understands and believes in 'systems biology', I can understand why they might believe we need help with pacing. If you approach CFS as a complex systems melt-down then an integrative approach may be essential to the solution. In other words, in a systems problem each pathology can influence other pathologies. So neurological, immunological, nutritional, endocrine, and other problems including our pacing and activity and thinking processes all interact. That means managing stress and pacing may be a critical part of recovery for some of us, along with other treatments. But what must be clear in all of this type of 'systems' discussion is that behavioral-oriented therapies are very unlikely to work out well by themselves. That is a point that probably should have been made much more clear.

    One other point - if CFS involves neural damage, then rehabilitative neuro-cognitive therapies might be very helpful for us, as they are helpful with stroke or brain injury patients. I am not saying that Howard's approach is the right approach, we need to see studies to prove that, but just pointing out that in theory some type of neuro-cognitive therapy might help CFS patients.
  2. Hope123

    Hope123 Senior Member

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    Julius, I have a background in healthcare. The way CFS research and treatment has been conducted is very different from that of other illnesses. As has been mentioned by others in the past, psychological counseling is part of the treatment for many medical issues but by no means are they the main focus. You don't see quadraplegic and paraplegic people pleading for more research into counseling; instead they're advocating for more funds to be allocated into stem cell research or factors which promote/ support the growth of neurons instead. This is the same for other illnesses - MS, lupus, cancer, heart disease, stroke, etc. etc. If the mainline advocacy organizations or scientists only advocated or primarily advocated for psychological research into conditions without the biological component, you can bet those patients would be up in arms.
  3. Cort

    Cort Phoenix Rising Founder

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    I actually liked a good part of the article - until I got to the last part.

  4. Hope123

    Hope123 Senior Member

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    This is not about my or your interpretation of pacing; it's about the impression it gives to healthcare staff, scientists, media, legislative aides, etc. about CFS. The more I know about CFS research, the more reluctant I am to just refer people to the CAA site.
  5. julius

    julius Watchoo lookin' at?

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    Right, and if CAA only did this we should be up in arms as well. But they don't only do this. It is one of many avenues they explore. I agree with you that exploring many avenues is the very best approach. Which is why we should be thanking the CAA.
  6. Hope123

    Hope123 Senior Member

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    At the very least, the staff needs to skim the articles they refer to and with Google as your friend, you can find out quickly who people are nowadays. If the CAA, an org. with years more experience than a sick patient like myself has with CFS, doesn't have any idea who Mr. Howard is or how their audience would react, the least I can say is "Houston, we have a problem."
  7. dannybex

    dannybex Senior Member

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    Excellent point Hope -- I was just replying to Kati's interpretation.
  8. jspotila

    jspotila Senior Member

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    I'm not sure if you meant to imply that the Association advocates for more funds for research into counseling, but that is not the case.
  9. Cort

    Cort Phoenix Rising Founder

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    On the other hand - and no one is going to like this - its surprising to me how much getting out of detrimental thought 'patterns' helps me. These aren't necessarily thought patterns about one's health; they are a factor, of course, because health is so important, but I mean - broad negative thoughts - feelings of dissatisfaction and irritation, expecting negative outcomes from a situation (without realizing it) - these things do increase the stress in my body; they turn on that little motor that doesn't seem to want to stop. Most importantly they have physiological effects for me - they weaken me and don't allow me to relax.

    This is why the idea of 'arousal' while distasteful to some, really makes sense to me. I don't think I am particularly negative either. I know people who really can't say much of anything good about anyone and they're buzzing around doing their exercise whenever they want - no problem at all. Doing things to get myself out of negative thought patterns, though - I can feel my body settle down and relax. I feel like my body takes any excuse it can to go banana's.

    I think anything you can do to strengthen your body and reduce its stress levels -whether its D-Ribose or Lightning Process or better nutrition is helpful. I'm surprised how helpful it is to calm down the pace of my mind and just be there in the moment. I'm very happy that I've discovered that.
  10. jackie

    jackie Senior Member

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    Uh-oh! Im feeling more words coming out!

    I think part of the problem is that "we" (the patient base) are on the inside looking out! For many of those with ME/CFS (in these times), if you have access to a computer (and enough energy to even sporadically read or research a bit) you have already heard of "treatment" options. The PROBLEM is with offering the MOST ACCURATE information to those on the outside looking IN!

    You know, out of my THREE doctors only ONE knew what "PEM" meant! One of my Neuros actually expressed surprise that I felt PAIN with CFS! He was sure it must be coming from another source (yes. my body is full of viruses - and I have no pain.:confused:)
    Even the most sympathetic Practitioner gently encouraged me to get out of the house and take up swimming or easy jogging or fast walking....because that is what his TRAINING told him would HELP me!( I said I can't even walk FAST to the BATHROOM!...this was almost incomprehensible to him..as there I was sitting in front of him, dressed, hair combed, and having a discussion!)...he would NOT be seeing me the next day...and the next...and the next! - EXPERIENCING PEM!)

    Bottom line...hearing of pamphlets like this one being touted don't concern me...for me! I KNOW how to interpret the information offered because I KNOW my body - AND the peculiarities of the disease..AND I've tried to keep up with the vast amount of research.

    But many out there, I'm afraid (the ones potentionally in charge of my "fate")...may not!

    j (sounding like a broken record)
  11. mezombie

    mezombie Senior Member

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    Jennie, I suspect everyone appreciates what you are doing here.

    What I don't understand is why the CAA staff who are reading this forum don't seem to be acting on the constructive criticism. Why do you need to pass it on? What's up with the paid, healthy staff?
  12. CBS

    CBS Senior Member

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    "Don't be an idiot*"

    * The title is my reminder to not push into a crash and in it's entirety is "Don't be an idiot and over due it. You know that you'll crash." I shared it with Dr. M. and he asked if he had my permission to use it with other patients (perhaps a bit less offensive coming from one patient to another patient).

    All but the first underline in the quote below from the Stanford Guidelines are mine.

    Cort,

    I'm not the least bit bothered by anything you have said about the importance of good mental/emotional hygiene. I do however disagree with the notion put forth by Alex Howard that 'blips' are a good thing and that a lack of blips is evidence that you aren't putting forth enough effort. Very knowledgeable Infectious Disease docs, including Dr. Montoya would classify blips (or crashes) as seriously jeopardizing a patient's potential for the fullest possible response to treatment:

    Unlike Alex Howard, where appropriate, Dr. Montoya is very careful to state when something is a belief or hypothesis.
  13. Hope123

    Hope123 Senior Member

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    Jspotila, my main concern here is the first rule of medicine 'primum non nocere.' (This being one of the few times I get to employ my college Latin!) First do no harm.

    Since UK patient surveys, some studies, and anecdotal reports report that people have been made worse by GET or simple instructions to just increase their activity because CFS is due to erroneous illness beliefs, deconditioning, etc., it is extremely important for the CAA to stress that GET or exercise can be not just neutral but detrimental to certain people with CFS and that for many folks, pacing or other such acitivites help manage but do not treat the illness at its root.

    I used to be one of those outsiders looking in and am used to recommending exercise for people so I've been on the other side. All the training I had did not mention CFS or how to manage it and many healthcare professionals I saw in the course of this illness had no idea. Perhaps they felt more open saying 'I don't know" to me; at least they were honest. What saved me were two observant physicians that had seen a few patients like myself. They did not know what was going on but they had seen the crashes and were the ones who warned me to be careful of my activity level.
  14. Gerwyn

    Gerwyn Guest

    cort i dont even know who they are it was a genuine question.Having said that to allow what is essentially a sales pitch from aprivate money making organisation is questionable in terms of judgement.There is no science there That graph is from thin air and none of the statements made are supportable scientifically.it reminds me of the various spurious claims I,ve encountered in the past
  15. Kati

    Kati Patient in training

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    Hope this is exactly my thought. Exercise, hypnotherapy, meditation will not cure your symptoms unless you don't have MECFS and instead you have a fatiguing condition. While exercise may help preventing deconditioning, it may also cause a relapse or a crash that will set someone deeper into the disease.

    Again, while viral cause is not yet confirmed, we all know there has been strong suspicion for a long time now- and honestly I don't think it is helpful to focus on meditation, GET, CBT as forms of treatments for our disease.
  16. Gerwyn

    Gerwyn Guest

    I agree I found that article misleading simplistic and spinning like a top I am not sure whether their"cured" patients had the disese in the first place.I had no idea that the CCA were the cfids
  17. Orla

    Orla Senior Member

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    I don't want to comment on what the CAA should or shouldn't be doing, I'll leave that to the people in the US. But I would like to comment on what I think would be the main problems for me with someone like Alex Howard.

    One problem is that he repeats a lot of the psychobabble we have been trying for decades to fight. I am not talking about someone saying stress can make the illness worse or the like, but the rubbish about behaviours leading to ME/CFS, people doing less than they can because of conditioning/abnormal fears, recovery being within our grasp etc.

    I have a major problem with anyone who claim they have a recovery programme for ME/CFS, as we know there is no such thing. Some of the more pushy people basically end up putting the blaming on patients for not recovering (there is often a whole list of arguments that can be put as to why someone doesn't get better: e.g. maybe they didn't try hard enough? maybe they didn't do it right? maybe they just need to keep at it for longer? maybe they don't really want to get better?) .

    I have come across a lot of people who adopt emotional blackmailing techniques in order to sell their treatment. They will ague that if the person really wanted to get better they would try anything, spend anything etc. I have heard the "but what price health?" argument many times It is not unique at all to the ME situation though.

    Just a few annoying Alex Howard Statments:

    "Using supplements or other therapies as a way to rationalize to yourself you are doing all that you can to get better, but really this is going through the motions and allows you to avoid facing real emotional issues underneath"

    I think this is just offensive. People like me are not spending some of their small amount of money on supplements just to go through the motions. I think this is just a hard sell thing where he is trying to get the patients to doubt themselves and their commitment to getting better, and basically saying you don't really want to get better unless you follow his advice.

    <Thinking you simply should be doing more. This could be called shoulding on yourself its a judgemental message from the super-ego >

    but then he also says

    <Most common reasons you avoid doing more than you can>

    Other people have pointed out the contadiction in some of what he is saying. Of course it is a handy Heads I win, tails you lose argument, another common quack tactic. Everyone is going to have some habit or trait (either existing or previous) that can be picked upon or blamed for their getting sick or not recovering. And you could really undermine a patients self-worth and confidence by making them doubt themselves.

    On the second quote there, has anyone actually ever met someone with ME/CFS who were not doing as much as they could? I know if someone gets very depressed that might stop them from doing things, but I think it is very rare for someone with ME/CFS not to be doing as much as they can.

    "youve been ill for so long you think like a sick person, even though your body is actually stronger than you realise"

    Classic psycho-babble.

    Orla
  18. Dr. Yes

    Dr. Yes Shame on You

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    Jennie, I don't understand your question. Based on your response, I think you must have totally misunderstood my comment. All I meant was that I don't understand why you, or anyone else at the CAA, or I for that matter, should have to tell the CAA about major problems with their own literature and releases. Can't they make sure there aren't any before publishing them?? If they did, you and I and others wouldn't have to waste a single drop of energy over their mistakes, as we did over the other Spark materials and are now over this newsletter issue. I hope I have even further clarified my point, as it was never meant to upset or irritate you, but more as a commiseration, if anything, and also to express frustration at the CAA (NOT at you) for releasing yet another publication with a disturbing flaw... thus requiring others to help pick up the pieces, as you have started to do now.

    As for the issue of the CAA representing severely ill/ disabled patients, much of it is spelled out in multiple posts in the "CAA Pamphlet" thread; I don't have the energy to summarize all those points made by all those posters again. In that thread many of us were addressing the problems with the way CFS treatments are presented in CAA literature, etc, esp. the scant references late in passages (as opposed to bold disclaimers at the beginning of certain discussions, as suggested by a few other people) to the fact that treatments like CBT/GET or exercise in general are wholly inappropriate for many of us... and how we remain more of a footnote rather than part of the public face presented to doctors and everyone else.

    In the UK the estimated percentage of ME patients who are housebound or bedridden is 25%.. what is the percentage here? Has anyone done a thorough investigation? (Is there any reason it is likely to be less than it is in the UK?) More importantly, where is the concerted effort to advocate for extensive federal and state financial aid to those who cannot afford housing or important doctors visits or medical supplies - like wheelchairs - or even food, yet are not recognized by the systems in place as being 'worthy' of such support? Or at least to draw intense, focused attention to these issues? Why is there no discussion of the immense difficulty of getting a wheelchair - especially electric ones, since very few severely affected ME/CFS patients can push themselves - from Medicare or any other insurance because they do not recognize that this disease is disabling enough? (After all, if CBT or GET can get us to a higher functional level, we don't need a fancy wheelchair!) These are some of the reasons why I mentioned that the CAA doesn't seem to advocate for very ill patients - and I should add, nor for those with no economic support. Of course if it is doing that privately, behind the scenes, there is no way the rest of us would know about it, and: (1) so far it doesn't seem to have worked, (2) why not do it publicly as well?

    Cort - I don't have the energy to respond to your posts at all anymore, but I will just point out one thing that you seem to have missed.. nobody posting here said pacing was just generally a bad approach in any way. I sure didn't. I have no problems with it, and try it when possible myself. Howard mixes some good ideas (borrowed from others) with some really toxic ones. How anyone of us can defend recommending an article that contains that junk (that has been quoted and re-quoted in this thread) is beyond me.
  19. Dr. Yes

    Dr. Yes Shame on You

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    Howard does. Please listen carefully to the third video on the page I linked to earlier, or just look at the excerpt I quoted from it. And don't ignore the quote that IS in this article that was requoted a few times (starting in post #2). Howard is engaging in old-fashioned doublespeak.

    You seem to have a very simplistic view of what those members are saying. Please read their posts more carefully. Not one person said psychological counseling is a bad thing (nor would I). Not one would say that the incorporation of counseling necessarily implies a psychosomatic element to ME/CFS. The only thing any of us said is that an approach that favors the view that our pre-illness behaviors are what set us down the road to this disease, and that without which we would never relapse again (once healed by his treatment) is emphatically not an approach that should be recommended by the CAA.

    Hopefully, after reading this post and re-visiting the others, you'll see what the problem was.

    (Btw, did anyone notice that I shaved?)
  20. Orla

    Orla Senior Member

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    <Btw, did anyone notice that I shaved?)>

    LOL! And you seemed to have jumped species,

    Orla

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