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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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ME Analysis - Patient created Web document relating to the PACE study

Discussion in 'Latest ME/CFS Research' started by alex3619, May 14, 2012.

  1. Enid

    Enid Senior Member

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    Stay stubborn Graham - we have seen too much over the years of utter nonsense - now biomedical research reveals all and of a willful ignorance amongst the gee "all in your mind".I mean to say are the psychos (GPs moved on) capable of understanding the complex research and findings of those who specialise in real medicine.
  2. Chris

    Chris Senior Member

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    Another question: what exactly does "specialist medical care" mean in the context of British treatment of ME/CFS?? I suspect essentially "nothing," and if I am correct, that might be used as another vector in the critique?
    Best, Chris
  3. Graham

    Graham Senior Moment

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    They were not too specific about "specialist medical care", but did say that it could include help with sleeping problems and pain control. More importantly, they said that it was more than the level of care that would normally be provided (presumably by the usual GP/local doctor and the ten to twenty minutes that many of those who see a specialist actually get). That is why the SMC sessions should have happened before the trial of CBT and GET began.

    My son has had ME for 22 years, I have had it for 10 years. Between us, being involved with a couple of support groups and a couple of online groups, we know around 30 to 40 people with ME well enough for know how they get on with their doctors. I would say that three of them have fairly pro-active local doctors who go out of their way to find something that helps, slightly more have useless or even unpleasant local doctors who effectively just shrug their shoulders, and the rest have doctors that can be persuaded to try something if we come up with suggestions and some evidence, but are unlikely to prescribe much for pain relief etc. directly.

    My sister lives in BC (Richmond), and I gather that the attitude over there is much better. But as she doesn't suffer from ME, it would be hard for her to know.

    Thanks for the rallying call, Enid. Not many people would encourage me to remain stubborn! I'll have to get you to talk to my wife and son.
  4. Enid

    Enid Senior Member

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    Yep the way it goes Graham - I am so sorry. But great things for all - but only as possible for you.
  5. peggy-sue

    peggy-sue

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    Is anybody interested in serious harm caused by CBT that was not related to ME at all?
    Rather( so-called) therapy for OCD. (I have a wee story of my own.)

    I have only recently "spoken" to somebody (a friend on an glass forum) who told me he has ME and was one of the subjects in the pace trial.
    He said the "CBT" taught him a lot about coping with the illness, about not crashing and burning and about accepting the limitations. I think he was very uninformed about things before going - but he's glad he did.
  6. Don Quichotte

    Don Quichotte Don Quichotte

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    Thanks Graham,

    I thought I should also add my small contribution (and not just give you more homework).

    From the supplementary material:

    SMC was given by a total of 38 different physicians. 27/38 were liaison psychiatrists, 4-GPs and 7-other (non specified physicians).

    The treatment in this group included symptomatic pharmacotherapy (especially for insomnia, pain and mood)-not clearly specified. (but my " educated guess" would be mostly antidepressants).

    Harm:

    In the CBT group (which is harmless " talk therapy") there were 4 patients with episodes of self harm or worsening of depression/CSF symptoms, which were possibly related to the assigned treatment.
    In the other groups there were 2 patients with such symptoms.
    This probably did not reach statistical significance because of the small sample size, but may possibly be significant. (there were 160 patients in each group).

    Furthermore, there was no comparison to patients receiving no intervention. (possibly in this group there would be 0 episodes?).

    There was a total of 49 episodes of SAEs-serious adverse events (defined as life threatening, requiring hospital admission, severe worsening of a known condition etc). Those are clustered together for all the patients, without mentioning of group. Those are also not mentioned in the abstract or text (at least I could not find them) and only shown in one table (which can easily be missed) and in the supplementary material. 9 and 8% were in the more physically active groups (APT and GET) and 4% in the SMC and CBT. Could be a coincidence. There is no mentioning of which SAEs were in which group (eg-if there were more orthopedic surgeries and injuries,as opposed to ectopic pregnancy and pneumonia in the GET it could be meaningful)

    They include: orthopedic surgeries, epileptic seizures, asthma attacks, accidental head injury which may or may not be related to the treatment assigned.
    Which ever way you look at it, this is a relatively high number of SAEs for a group of fairly healthy young people receiving harmless treatment.

    90% of the patients had non-serious adverse events. Those are poorly defined. Again, you are not expected to have adverse events (which means any worsening which does not require hospitalization or causes long-term disability) in such a significant percent of patients with a relatively minor illness receiving harmless treatments. Most had more than one episode (there were a total of about 1000 episodes in each group). So, either the illness is not as mild as portrayed or the interventions are not so harmless.

    There was no true control group (patients in which there was no intervention) so it is hard to know what is the natural course of the illness and what is harm as the result of those interventions.
    Overall most patients (including those in the SMC group) received some form of behavioral/psychiatric therapy.

    So, a possible conclusion is that CBT and GET are better than antidepressants?
  7. Esther12

    Esther12 Senior Member

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    I think SMC is best understood as the control group. Ideally, they'd have had homeopathy or something, and it's not really clear exactly what 'specialist medical care' is, or how easily it could be provided to patients. This could be deliberate, as the results were so poor for CBT/GET that they if SMC was presented as the control group, PACE could easily be used to argue that it is not worth funding any of the treatments for CFS tested.

    re SAEs etc: Tom Kindlon's paper on harms looked closely at PACE, so you could look at that if you're interested: http://www.iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx

    The trouble with PACE is that the results have been spun in such a way that it makes it impossible to trust the researchers presentation of any of their data.
    Dolphin likes this.
  8. oceanblue

    oceanblue Senior Member

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    @e12
    Great to finally see what you look like.
    OverTheHills, Bob and WillowJ like this.
  9. Bob

    Bob

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    It's strange... That's exactly how I had always imagined Esther! :) :)
    WillowJ and Esther12 like this.
  10. Esther12

    Esther12 Senior Member

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    I have to admit, you look different to how I expected.
    Bob and WillowJ like this.
  11. alex3619

    alex3619 Senior Member

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    Given the state of medical care for CFS in general practice in the UK, my suspicion is that Standard Medical Care is actually a very poor grade of care, well below current best practice. It is this state of care that was used as the control - it would be nice to get details but I suspect the care varied patient by patient and has no common protocol. Bye, Alex

    PS I look a vaguely like my avatar, only younger and not nearly as bald or grey, since we are discussing avatar looks. I used to wear my hair like that, and so I earned a nickname with some of Big Hair. ;) The Mad Scientist look was what I had for over a decade.
  12. Bob

    Bob

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    The main point about SMC was that it was used as a control group.
    So the results from the SMC group are not so important in themselves, but are used to interpret the results from the CBT and GET groups.
    (Although it is interesting that people in the SMC group experiences better improvements than could be attributed to GET or CBT.)


    SMC seems to be quite basic advice, alongside normal medical care.

    From the paper:

    From supplementary web appendix:

    For in-depth info about the nature of SMC, the SMC Manual for Doctors is very long and detailed:
    http://www.pacetrial.org/docs/ssmc-doctor-manual.pdf


    .
  13. Valentijn

    Valentijn Activity Level: 3

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    Hi Bob! FYI, text written in colors generally isn't readable for those of using a dark background. Using the "Quote" function in the editor would probably work better.
  14. Graham

    Graham Senior Moment

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    Hi all. Just to let you know that I have created a Facebook page for the site, called ME Analysis. If you do look, go gently with me: I am an innocent in these matters.
    Dolphin and ukxmrv like this.
  15. Bob

    Bob

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    Thanks for the info Valentijn. I've adjusted that post.
    It's unfortunate though... I don't like using quotes because they all disappear when someone quotes your post in a response.
  16. Valentijn

    Valentijn Activity Level: 3

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    Good point. I'll post to the tech board and see if nested quotes are possible.
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  17. oceanblue

    oceanblue Senior Member

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    Nested quotes would be an excellent idea
    Dolphin, WillowJ and Bob like this.
  18. Esther12

    Esther12 Senior Member

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    Good luck with the world of social networking Graham.

    I still don't have an account myself, but if I did, I'd definitely friend you!

    This is the link to your page, for everyone else to connect with: http://www.facebook.com/pages/ME-Analysis/290904064336076

    I don't know much about facebook, but get the impression a lot of CFS discussion goes on there, on pages like the ME Associations. Maybe someone who knows more could promote your page there?
    Dolphin and WillowJ like this.
  19. K2 for Hope

    K2 for Hope ALways Hoping

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    OK, I just posted the animation on my Facebook News page and gave a brief explanation about how many yrs this trial took and that it was very costly only to find out that people with ME/CFS don't really get any better with just a psychological approach.

    I post this stuff because some of my family and friends on FB don't know what to think. I keep posting about everything. Bio-markers getting patented, young people getting ill and dying, etc.

    No one likes to see or hear it, but I will continue to post, as Facebook is where all the young people hang out and I plan on influencing them.....

    'PS. A special thanks to all who worked so dilligently (SP?) on this project for what to me would be eternity!!!!
    Dolphin and oceanblue like this.
  20. Graham

    Graham Senior Moment

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    Thanks K2: it felt like an eternity as well!

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