1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

UK NHS Online Clinic for August is CFS/ME & Fibromyalgia

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

  1. Bob

    Bob

    Messages:
    7,769
    Likes:
    9,323
    England, UK
    I agree, but the vast majority of our community always engages constructively. (Even so, we are ignored and derided.)
    Although some in the medical profession would like to portray us all as a rampant bunch of marauding extremists, 99.99% of us engage constructively all the time.
    As another example of constructive engagement, the recent Guardian article had a very civilised discussion in the comments section.
    WillowJ, Sasha and Valentijn like this.
  2. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,891
    Likes:
    7,980
    Amersfoort, Netherlands
    Well, it's official. The "does GET actually help" question has now been killed off at least 3 times. My short and to-the-point query without too much information attached has been moved to the "research&funding" board where hard questions go to die.

    They're completely incapable of showing any evidence to support their claims, so are moving awkward questions to the section for inappropriate questions/complaints. What a bunch of bullshit.
    Cheshire and Esther12 like this.
  3. Esther12

    Esther12 Senior Member

    Messages:
    5,134
    Likes:
    5,005
    Disgusting attempt to avoid difficult questions. I can't tell if Bevinton is deliberately misleading people, or too stupid to understand the results she cites.
    Valentijn likes this.
  4. Sasha

    Sasha Fine, thank you

    Messages:
    7,555
    Likes:
    5,578
    UK

    I don't know if you've tried this, but you could start your query with something like, 'Please don't move the following to the Research & Funding forum - it's actually a clinical query. I'm questioning the clinical advice given in this thread and the citations I'm giving are to back up the rationale for my question. I'd appreciate an answer from the clinician. Thank you.' And then off you go with your question.

    This TalkHealth forum will presumably stay on the net as a reference and so it's important that people find clinical questions (and your question is a clinical one, as I understand it) in the appropriate forum, particularly on this contentious issue. And I think it is a fair question.
    Bob likes this.
  5. Esther12

    Esther12 Senior Member

    Messages:
    5,134
    Likes:
    5,005
    Has Shepherd commented anywhere on the censorship, misleading claims, and refusal to engage with the evidence? Hopefully he's making it clear how shameful this is.
    biophile likes this.
  6. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,891
    Likes:
    7,980
    Amersfoort, Netherlands
    It's been closed to questions almost all day. Might not open back up again.
  7. Sasha

    Sasha Fine, thank you

    Messages:
    7,555
    Likes:
    5,578
    UK

    Doesn't it run until the 20th or something? Maybe they're using Sunday as a 'fire-break'. I'd be surprised if they kept it locked down.
  8. Esther12

    Esther12 Senior Member

    Messages:
    5,134
    Likes:
    5,005
    It wouldn't surprise me if they had Bevinton answer the questions she wanted, and then locked the threads before anyone could point out how she was misrepresenting things.
    Valentijn likes this.
  9. Purple

    Purple Bundle of purpliness

    Messages:
    1,369
    Likes:
    2,219

    You can view many pages on Facebook (such as the ME Association Facebook page) without needing to have a Facebook account. Many pages are completely public (you would need a Facebook account only to contribute). Try clicking the link to see if you can view it.
    WillowJ likes this.
  10. biophile

    biophile Places I'd rather be.

    Messages:
    1,350
    Likes:
    4,031
    Even a superficial explanation would be better than nothing. Instead we had threads closed down and moved to the off-topic graveyard without any explanation whatsoever. There was no obvious militancy or abuse in the questions, just real people doubting or asking for evidence that GET works as claimed by the experts. There was a blanket message about there being too many questions in general (there was many personal medical related questions), but there does appear to be attempts to ignore the hard questions in relation to CBT/GET and increases in activity.

    Regarding the question being clinical vs research, if the clinic is primarily about patients asking clinical questions about their own specific case, I guess citing or asking for evidence may be a research issue? But the experts have frequently discussed and linked to evidence during their answers. I was not sure if the "research & funding" section was set up as a graveyard for any question which cites or discusses research:

    "Sorry but our panel of experts are unable to answer questions that are in regard to funding or research matters, or a complaint against the NHS. These questions need to be addressed to your local GPC (General Practitioner Council)."

    Were participants in previous online clinics for other medical conditions allowed to mention research? I had a quick look at all the previous online clinics and none of them had an off-topic graveyard section!

    Furthermore, the front page leads with this ( http://www.talkhealthpartnership.com ):

    Their motto is "sharing information and talking health!".

    The online clinic service page starts with this ( http://www.talkhealthpartnership.com/online_clinics ):

    All this talk about openly sharing and discussing information is in contradiction to shutting down threads which mention CBT/GET research. Why is the CFS/FM/ME clinic the only one with an off-topic graveyard section in their entire history of online clinics? I guess the question of evidence for increases in activity was a little too "indepth" for the experts?
    Sasha, Valentijn and Esther12 like this.
  11. Esther12

    Esther12 Senior Member

    Messages:
    5,134
    Likes:
    5,005
    I noticed that the critical/questioning post to Miller was not moved. I wonder if Bevinton is just genuinely not very bright, rather than being deliberately misleading, and is really not able to understand the questions and criticisms that are being made of the claims she makes and the way she cites research, so has had to ask for the moderators to protect her from informed patients?

    I didn't see her ever engage with any of the detailed questions she received. She just seemed to be there reciting her creed.

    Actually, Miller seems even more evasive... he avoids saying anything much, while giving vague support for CBT/GET. Maybe he's aware of how poor the evidence base is, while Bevinton has been suckered by the spinning of her own trial results. As an illustration of the current way CFS is treated, I think that this clinic has been rather successful, however depressing that may be.
  12. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,891
    Likes:
    7,980
    Amersfoort, Netherlands
    The impression I got about Miller from reading all of his responses is that 1) he understands how ME impacts patients and is pretty enthusiastic about medically treating symptoms, but 2) he is extremely deferential to NICE and government-approved authorities.

    His biggest issue might be an inordinate faith in authority, or a basic inability to question authority. Some otherwise very intelligent and compassionate people seem to have this sort of problem, which can be especially apparent in an area like ME/CFS where the authority (NICE) is very much contradicting reality.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,035
    Likes:
    3,388
    Cornwall, UK
    I did! The page said "You must log in to see this page."
  14. Sasha

    Sasha Fine, thank you

    Messages:
    7,555
    Likes:
    5,578
    UK

    I just googled the link to find the TalkHealth post and it doesn't come up so here's the text from the MEA FB page:

    Why is GET (graded exercise therapy) such a controversial management issue in ME/CFS?​

    As this online clinic forum is discussing activity management and exercise I would like to make a personal contribution​

    As a doc with longstanding personal experience of ME/CFS I have been involved in various aspects of research into muscle problems in ME/CFS - including donating samples of my own leg muscle for research. As a result, this was the first research, published in The Lancet, to demonstrate a clear abnormality in muscle energy dynamics during exercise (= early and excessive acidosis) in someone with ME/CFS​


    So I am not convinced by the over-simplistic explanation that the exercise induced muscle fatigue that is so characteristic of this condition is always due to deconditioning. Neither is the research that is often quoted to support this model of exercise induced muscle fatigue very convincing.​

    I have made considerable progress over the years with activity management that is based on pacing - an approach that has consistently achieved extremely high approval rates from people with ME/CFS and which is recommended by all the major patient support charities​

    As a result I am now able to walk several miles, go swimming (even in Lake Windermere this summer!) and perform physically in a way that many people of my age do - even though the underlying illness continues​

    I have also tried a more structured approach based on graded exercise and not found it helpful.​

    The MEA receives constant feedback from people with ME/CFS who say they have been made worse (sometimes much worse) as a result of graded exercise programmes - sometimes because it appears that they have been applied in a very inflexible manner that takes no account of individual circumstances​

    Under the umbrella of ME/CFS is a complex multisystem disorder with a very wide range of clinical presentations and disease pathways​

    So activity management - balancing appropriate amounts of activity/exercise with approriate amounts of rest/relaxation - has to take account of the individual circumstances according to the stage and severity of illness as well as the type of clinical presentation​

    Results from the largest ever patient survey of all approaches to management, which was carried out by The MEA and involved over 4,000 respondents, found that in relation to GET (906 respondents):​

    3.4% greatly improved​

    18.7% improved ​

    21.4% reported no change ​

    23.4% reported that they felt slightly worse​

    33.1% reported they were much worse​

    With regard to pacing (2137 respondents):​

    11.6% reported great improvement​

    59.6% reported improvement ​

    24.1% reported no change​

    3.5% were made slightly worse​

    1.2% were made much worse​

    So while some people under the ME/CFS umbrella, possibly those with chronic fatigue who are deconditioned, may benefit from graded exercise therapy there are others who clearly do not do so and are made worse as a result​

    This Is why I believe it is wrong to recommend GET as a 'one size fits all' treatment for everyone with mild to moderate ME/CFS - as is currently the case in the NICE guideline on ME/CFS. And this is why The MEA still believes that pacing is the most helpful form of activity management for most people with ME/CFS​

    The MEA Management Report can be downloaded free from The MEA website:​


    Research into muscle abnormalies in ME/CFS is summarised and referenced in section 5:3 (Muscle Studies - Research section) of the 2013 MEA purple booklet:​

    Dr Charles Shepherd​
    MB BS, Honorary Medical Adviser, ME Association​
  15. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,726
    Likes:
    4,585
    Sth Australia
    That certainly doesnt surprise me when many of us either dont have good doctors who know much about our issues to answer them or just are too sick to travel to see our doctors.
    biophile likes this.
  16. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,891
    Likes:
    7,980
    Amersfoort, Netherlands
    One subforum (Diet) has been unlocked for at least the past 10 minutes or, and during this time that expert is actively answering questions. Everything else is still locked down, so will probably only get unlocked if/when the relevant experts want to answer questions.

    It looks very unlikely that any more questions will be permitted.
    Sasha likes this.
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,035
    Likes:
    3,388
    Cornwall, UK
    Thanks, Sasha. Bob posted the talkhealth link to it yesterday. Here it is again:

    http://www.talkhealthpartnership.com/forum/viewtopic.php?f=490&t=4739
    Sasha likes this.
  18. Esther12

    Esther12 Senior Member

    Messages:
    5,134
    Likes:
    5,005

    I see what you're saying. Also though, I think that the problems with NICE are, currently, in how they can be interpreted. There's a lot of uncertainty there, and a reasonable doctor could well take them to mean little more than: 'errr... don't know really. Maybe try some GET or CBT to see if that helps? Be careful and don't expect too much'. Another doctor could take them to mean 'Get these patients to finally acknowledge their psychological problems, and exercise themselves better'.
    WillowJ, Valentijn and MeSci like this.
  19. biophile

    biophile Places I'd rather be.

    Messages:
    1,350
    Likes:
    4,031
  20. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,891
    Likes:
    7,980
    Amersfoort, Netherlands
    All of the boards are unlocked now.

    I bet we still aren't allowed to ask if GET's "helpfulness" extends to increased activity levels. But if I do ask, I would REALLY appreciate it if no one here chipped in with their own comments on my question - it's probably pretty doomed if you do.
    Sasha likes this.

See more popular forum discussions.

Share This Page