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Article: Treatment the UK way - the ME Association's ME/CFS Treatment Survey

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 2, 2010.

  1. Gert

    Gert

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    Hello Cort and everyone

    Can anyone tell me what's going on with the XMRV Buzz page? I can access "forums.aboutmecfs.org" but not any pages on"aboutmecfs.org". I just keep getting the message that my connection is waiting for the site to load and then it eventually times out.

    I live in NZ. Is anyone else having problems? :confused:
  2. Gert

    Gert

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    This is the message on firefox.

    "HTTP Error 504: Gateway Timeout
    The server, while acting as a gateway or proxy, did not receive a timely response from the upstream
    server it accessed in attempting to complete the request."
  3. Dolphin

    Dolphin Senior Member

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    I've problems also (from two different browsers, IE and Opera) and I'm not in NZ. I "rely" on that page as I can't keep up with the XMRV stuff and everything else. Also I can quickly get out of my depth on that type of science.
  4. Cort

    Cort Phoenix Rising Founder

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    Unfortunately the whole website is down - and at a most interesting time :cool: and I hope it gets fixed soon. I put the Buzz on the Media section of the Forums if you want to check it out.

    The Forums and website are on two different servers. The website was moved from one server to another and in the process things went kablooey.
  5. Michael Dessin

    Michael Dessin Senior Member

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    Great article Cort! Thanks
  6. Suella

    Suella

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    I am in the minority here. I found my 6 sessions of CBT to be very helpful.

    After medical diagnosis, I had CBT on the National Heath Service with a properly certified practitioner as part of a ME clinic in Nottingham, England. It was noted that I was particularly hard on myself, describing my self as pathetic and feeble. This is how I saw myself at the time.

    Through discussion with the practitioner I was able to identify that I came from an acheivement oriented family which helped to explain why I was putting pressure on myself to continue to be productive.

    The one to one meetings that I had turned the attitude around and I learned to praise myself for what I *can* do and for chosing to work with pacing etc to feel better and to improve my health.

    I also was helped to work out an appointments diary for a weekly and longer basis, making sure that I gave myself the appropriate amount of rest and didn't overbook myself with activities. The rules I developed then have been adjusted as I become better, and can do more. \properly followed they keep me from doing anything more than have minor flares. I've only had one episode I could describe as a relapse.

    I have used the tools I learned with the NHS over 3 years ago now, and have improved from about 30-35% on the scale that many doctors use to 65% plus. I'm now retired but am at college three half days a week and loving it.

    The NHS ME clinic and the CBT helped me to stop doing harmful behaviours and having thoughts which countered my body's attempts to feel better. They gave me the tools to know what works for me and what doesn't and the times of day that I am better than othersdoing certain activities, thus helping me to preserve my hard earned energy.

    Whilst the above was particulary helpful there was no on-going National Health Service support. That I got from Bruce Campbell's CFIDS Self Help site, http://www.cfidsselfhelp.org and I participate in the classes and target groups consistently as they give me the support and tools to slowly improve my health. I need the support and participation with fello patients to keep me disciplined in my pacing and considering new attitudes and approaches.

    There is now a new self-study set of classes by Bruce Campbell and Dr. Charles Lapp at http://www.treatcfsfm.org/
    This is almost identical to the above cited classes of Bruce Campbell, except there are no discussions or formal lessions. This may suit some of you better.

    Suella
  7. Dolphin

    Dolphin Senior Member

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    Have you ever used a step counter? Quite a few studies have found that on average people who used CBT reported bigger improvements on subjective measures like fatigue scales or the SF-36 physical functioning scale compared to control groups but there was no diference in the (small) increase in total step count or indeed in some studies, there was no increase in the step count at all.

    What appears to have is that people go for longer walks which appears to them that they are improving but the reason they don't do more steps is they have reduced in other aspects of their lives.

    Personally, if somebody is short of "energy units", I'm not sure if going for walks several times a week (or more) is a good use of energy. And may cause problems for people with other demands on them e.g. those who are working, studying full-time, have dependents, etc.
  8. Cort

    Cort Phoenix Rising Founder

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    That's interesting. I actually didn't know CBT worked like that. It seems CBT helped you get better by reduce the stress level in your life. Here you are a productive high achiever - you then get CFS - which, for a person who values high achievement - is a horrible fate. That in itself puts alot more stress on you- so by unwinding that stress (those negative conversations) you feel better. It makes sense - in a illness that involves a mess-up stress response - putting pressure on yourself or beating yourself up for not being well and productive - is just going to exacerbate everything and removing that pressure will help.

    I said stress response - but I'm thinking the autonomic nervous system - heart rate, blood flows, immune functioning; imagine an ANS that has forgotten how to manage the body well - a little too much stress and boom - there goes the heart rate up, etc...

    That fits my picture pretty well actually.
  9. Cort

    Cort Phoenix Rising Founder

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    That is actually my experience with the mind/body stuff I've done. I've ended up doing less. I'm sure if I did a step counter I am taking fewer steps now because once I started doing that stuff I really realized how detrimental too much exercise was to my well being. So as I got a bit better and felt physically stronger - I was actually doing less exercise than ever. (go figure)
  10. Wildcat

    Wildcat Senior Member

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    The stress levels in the lives of most people with ME are CAUSED by the UK ME policy. Being disbeleived, denied legitimate medical tests, useful medication, by being denigrated, denied legitimate sickness benefits, denied legitimate disability living allowance (financial help with mobility and care needs) our doctors don't beleive us, stress caused by being disbeleived by our friends and relations, endless psychologising, by reading disinformation about our disease in the media everyweek... the stress caused by medical denial and for some the medical abuse.
  11. Wildcat

    Wildcat Senior Member

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    The loss of practical help also means that activities for so many are about pure physical survival.
  12. suejackson

    suejackson

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    What I find most interesting about this UK study is what is MISSING. Almost everything that I consider basic, first-steps for treating CFS is missing from this study, including:
    - Correcting the underlying cause of sleep dysfunction with low-dose anti-depressants to correct hormone levels (the study mentions amitriptyline but that is only one of a dozen different options, one that didn't work for me)
    - Treating Orthostatic Intolerance
    - Diagnosing and treating underlying infections with anti-virals and/or antibiotics
    - Low-dose naltrexone

    The UK approach seems less medical than the US approach.

    I was also interested to see that Immunovir was included in the study since I just started it this week. The only mention of it in this summary was that 8% of patients on Immunovir got much worse. Cort, do you know the rest of the stats on Immunovir, including how many improved on it?

    Excellent, comprehensive summary - thanks!

    Sue

    www.livewithcfs.blogspot.com
  13. justy

    justy Senior Member

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    Hi Sue, i think the reason these things are missing is because in the main we are not allowed to be treated for these things. In the u.k GPs are not allowed to use the tilt test or search for underlying infections or parasites etc. They are also not allowed to treat us with ANTIVIRALS, so i imagine the people who did use immunovir did so either alone or from a private doctor. Im afraid i dont know what Naltrexone is.
    we dont have amedical approach AT ALL in this country because the NHS still doesnt believe it is a real illness. As was mentioned earlier the stress from this is really awful. I no longer visit my doctor or have any faith in them at all. I have never been offered ANY type of treatment whatsoever.
  14. Cort

    Cort Phoenix Rising Founder

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    It's amazing what a different world it is over there. Here the big problem is having enough money to visit a good doctor.
  15. Cort

    Cort Phoenix Rising Founder

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    I agree those are terrible stressors. While things are better over here (if you have money) many of them still apply - legitimate tests?, useful medications - there are no panacea's here; even people who see good doctors don't necessarily improve (altho some certainly do). None of the doctors I've seen have done the slightest thing for me and that includes Cheney. At least we don't have to read in the papers or live in a society permeated by such a negative mindset - that is a huge stressor; these things can keep the mind whirling and upset, heart rate up, body in a state of tension - its brutal.

    There are many other stressors to deal with as well - the loss of employment, career, being dependent on others, etc. - those effect everyone everywhere - no lack of stress in the US either :)
  16. Dolphin

    Dolphin Senior Member

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    I think listening to your body is a good thing. Which unfortunately can often mean doing a bit less (or even more than a bit). But some people sometimes then improve in time either with or without specific treatments (so listening to one's body doesn't have to mean doing less permanently).

    Anyway, just to be clear, I'm not saying a treatment that gets people to do less or not do more is bad.
  17. Dolphin

    Dolphin Senior Member

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    If you or somebody can adjust the file sizes that can be put in the library (even temporarily), I'll upload one or two CBT manuals. For example, the CBT manual for therapists for the PACE Trial (4135KB) and the CBT manual for patients (3978KB). It has all the session plans, handouts, homework sheets, etc. One could see how bits of it could be useful to some patients especially patients who are fairly newly diagnosed. It isn't that "heavy" to read.
  18. Cort

    Cort Phoenix Rising Founder

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    Will do - it'll be good (I think :)) to learn what all the fuss is about. :Retro smile:

    Let me know if it doesn't work.
  19. Sasha

    Sasha Fine, thank you

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    Interesting that you could get it! I was invited to participate in the PACE trial and said I'd want to see the research protocol in order to be able to make the judgements necessary for informed consent. I was refused (and didn't participate).

    ETA: By "research protocol" I mean not just the manuals for therapists but details of the study design including patient selection criteria and other methodological details. I didn't want to be in a study with stupid CFS criteria to be used later as a political tool to beat us with.
  20. Dolphin

    Dolphin Senior Member

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    Somebody posted them on the internet around a month ago. Although because of the way they were bundled, a lot of people have not felt comfortable downloading them (or that is my impression).

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