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The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
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UK NHS Online Clinic for August is CFS/ME & Fibromyalgia

Discussion in 'General ME/CFS News' started by Firestormm, Jul 10, 2013.

  1. biophile

    biophile Places I'd rather be.

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    Maybe I should not have bothered to write a letter-esque post with a dozen references, but it was providing solid background information in order to ask the following important questions which the experts should be able to answer:

    1) "So if CBT and GET on average do not actually increase total activity levels or increase engagement in other normal life activities, why is it still being promoted as doing so, and is this not encouraging false expectations about prognosis and the nature of improvements attributed to CBT/GET?"

    2) "Is it therefore possible that the safety of these therapies depends not just on avoiding pushing too hard too fast i.e. so-called "boom-bust", but also on avoiding significant increases in total activity levels, because patients were generally correct about an activity ceiling hindering functional rehabilitation?"

    I re-asked these questions under Valentijn's new post:

    http://www.talkhealthpartnership.com/forum/viewtopic.php?f=490&t=4755&p=13919#p13919
    MeSci, WillowJ and Bob like this.
  2. taniaaust1

    taniaaust1 Senior Member

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    :rolleyes:
    MeSci likes this.
  3. biophile

    biophile Places I'd rather be.

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    For some reason that reminded me of the episode where Cartman thinks he gains "psychic powers" after an accident and has a ridiculous "telekinetic battle of minds" stand-off with a bunch of other professional/"expert" psychics:

    Valentijn likes this.
  4. taniaaust1

    taniaaust1 Senior Member

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    I thought I'd give the clinic a shot and have asked their dietian/nutritionist whatever she is.. for some breakfast, lunch and dinner ideas with the diet restrictions I have. Hopefully she can offer me some good suggestions are right now my diet is being nightmarsh with me developing more food issues this year. Past 2-3 weeks.. milk I think is now giving me an autoimmune reaction. I was up at 4.30am feeling very unwell again due to what I put down to having cheese on my mushrooms yesterday and a yogurt. It sucks. (I was hoping i could do the food challenge I was doing and find out my thought about it being dairy was unfounded but all its done is further confirm its probably the dairy causing an autoimmune like reaction (it makes my neck ache too).

    Valajin (oh cant think of your nic). I saw your post there in the diet section and the foods you are reacting too and basically the same ones as I seem to be too. So maybe you'd like to check her reply to me when she does.

    lol @ biophids cartoon.
    Valentijn likes this.
  5. biophile

    biophile Places I'd rather be.

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    I have a feeling this next post on Valentijn's thread may be moderated, so I am posting here for the record.

    http://www.talkhealthpartnership.com/forum/viewtopic.php?f=490&t=4755&p=13929#p13929

    -

    Re: Does GET actually improve activity levels?

    Post by biophile.pr on Sun Aug 18, 2013 9:17 am

    I and many other patients have undergone numerous failed attempts at graded increases in activity. We have been sold a therapy which is framed as successfully rehabilitating many patients back to normal health and function. Numerous anecdotes of null or adverse effects have promoted many individuals to have a closer look at the evidence-base being used to support these claims. I previously outlined the evidence which strongly suggests that CBT/GET does not lead to increases in total activity levels.

    Is there convincing evidence which we are simply somehow not aware of? I have not been able to find it after years of searching. Please help me and other patients find a way to the evidence if it exists.

    Sense about Science have started an "Ask for evidence" campaign:

    http://www.senseaboutscience.org/pages/a4e.html

    "Evidence matters in many of the decisions we make - as patients, consumers, voters and citizens. If you want to know whether a claim made in a policy, newspaper article, advert or product is backed by scientific evidence, ask the people making the claim to provide it."

    So here we are asking in sincerity and for the concern of patients everywhere, where is the evidence that CBT/GET increase total activity levels as commonly presumed? This lays at the heart of the controversy, not the fear of stigma surrounding mental illness, nor the supposed naive Cartesian dualism, et cetera.

    Sense about Science apparently can offer help if adequate answers are not provided:

    http://www.senseaboutscience.org/pages/a4e_what_we_can_do.html

    "You don’t need to be a scientist to ask for evidence. Anyone can pick up the phone or send an email asking for evidence behind any claim. But if you need more help, Sense About Science has hundreds of organisations and 5,000 scientists standing by. We can help you with your response and publicise it. It might become a rallying point for others who have been frustrated by the same claim. Where we are constantly fire-fighting on a particular issue, we work with scientists and members of the public to draw out the underlying assumptions and to address misconceptions."
    Bob, Valentijn and Sasha like this.
  6. Firestormm

    Firestormm Senior Member

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    Dr Shepherd has entered the debate about experiences of exercise and GET; but I can't locate where it appears within the clinic - so have asked. It's a mess over there now with things being closed and moved around!

    Here's the re-posting on MEA Facebook. I'll add the link to the clinic thread it appears on later if I am able:

    Link to MEA Facebook.
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Brilliant, Tania - thank you! I have just done it. Will a miracle occur that they finally get it...?
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Can you post the whole message here for people who are not on Facebook, please? Thanks.
  9. biophile

    biophile Places I'd rather be.

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    Now Valentijn's thread has been locked too, oops. Perhaps they are trying to limit the number of posts before an answer is given, but with one or two days remaining I cannot see much of a lively discussion happening.

    Maybe asking for evidence or questioning claims is not what the NHS Forums was meant for, but the underwhelming response to such questions reflects what has been happening for decades.

    In March 2011 MEA conducted a survey asking "How will the PACE trial results affect the NHS management of people with ME/CFS?" Out of 751 votes, 79% answered "Make it much worse."

    http://www.meassociation.org.uk/?page_id=1891

    I wonder how this panned out?
  10. Valentijn

    Valentijn Activity Level: 3

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    They've locked down all of the boards - Question time is probably done, with the last couple days of the clinic being saved for answers.
    taniaaust1 and biophile like this.
  11. biophile

    biophile Places I'd rather be.

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    Sasha and Valentijn like this.
  12. Sasha

    Sasha Fine, thank you

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    Nielk, MeSci, Valentijn and 1 other person like this.
  13. Valentijn

    Valentijn Activity Level: 3

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    I wonder how many questions they get when they have clinics for better treated diseases?
    Sasha likes this.
  14. biophile

    biophile Places I'd rather be.

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    Have a look at the clinic index:

    http://www.talkhealthpartnership.com/online_clinics/clinic_index.php

    The CFS/FM/ME forum does have the highest number of threads and posts (227 topics, 954 posts, with most in the "adult medical" section) but thyroid disorders was a close second (189 topics, 775 posts) when compared to the others.
    Firestormm and Valentijn like this.
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I did a quick test search for 'heart failure' as an example and there was just one question and one answer, so maybe that is the standard protocol and we were being a bit paranoid based on previous experience!

    On this page about the talkhealth forums it says
    There don't seem to be any for ME/CFS at the latter link. Maybe someone can find out how we get one started? I couldn't see any info. I gather that you need to join from this at the top of the page
    As I already have usernames and passwords coming out of my ears I don't want to join anything new!
    Valentijn likes this.
  16. Bob

    Bob

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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Bob likes this.
  18. Bob

    Bob

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    Dr Shepherd's post is a breath of fresh air. He seems to be the only 'expert' on the panel (that I've seen - I haven't read through the whole forum) who has any connection to the actual reality for ME patients.
    I am very impressed with the way that the patient community has mobilised to question the authority and validity of the nonsense being spouted on that forum by the 'experts'.
    I hope that the BMJ would be proud of us, as per their call to "let the patient revolution begin".

    It is depressing though, that (Dr Shepherd excluded) the 'experts' don't seem to be aware of any these issues re GET that the patients are raising.
    And can't even bring themselves to moderate their enthusiasm for GET to qualify their answers.
    From what I've seen, GET has been promoted as almost a cure-all for all CFS/ME patients (except, thankfully, by Dr Shepherd.)

    Dr Shepherd excluded, the 'experts' don't mention that only a very small minority of CFS/ME patients should expect to see any (subjective) improvements after GET. (Why haven't they stated this? They aren't presenting the science, but they are presenting their own biased uninformed opinions.)
    And (as Valentjin and Biophile have pointed out) they haven't told the patients that there is no evidence for any (meaningful, or sustained, or overall) improvement in actual physical function after GET.
    And they don't say that the expected subjective improvements would be modest.
    And that GET was found to make no difference to employment etc.

    etc etc etc.

    It is annoying, but at least patients are able to mobilise to challenge the ignorance.
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I've created a thread for the survey in the Action Alerts and Advocacy section.

    It's here
    WillowJ, Valentijn and Sasha like this.
  20. Sasha

    Sasha Fine, thank you

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    I've also been very impressed by the quality of the questions from patients and the respectful and socially skilled way in which they've put their challenges to the 'expert' views. That's infinitely more effective than aggression.
    peggy-sue, Valentijn, Bob and 2 others like this.

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