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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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Shooting Down the Top 10 Myths from the NHS Online Clinic

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Sep 6, 2013.

  1. ~ Ariel

    ~ Ariel

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    Hi

    Thank you for this ~ Shrude ! ~
    Did you write On the nHS forum:
    " My sleep has been quite good, since I found a supplement to help with my brain being over-stimulated, and some other things to reduce pain...."

    If so, what please is the supplement which helped with brain firing? Mine is all all over the shop at the mo...
  2. ~ Ariel

    ~ Ariel

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    PS - Oops ...trigger-happy: post went before I could insert your name, Valentijn ~
  3. user9876

    user9876 Senior Member

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    I think a doctor would say they were just following the evidence. I'm not sure that your average doctor would have the time, or intelligence, to read something like the PACE trial papers and despin them. So maybe the question is should Queen Mary's and the Lancet be held liable. I notice that journals have a clause where they try to deny liability but in the UK courts have been known to throw out such clauses normally in consumer cases but there are a few commercial cases as well.
    WillowJ, MeSci, Dolphin and 2 others like this.
  4. Valentijn

    Valentijn Activity Level: 3

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    For me it's N-acetylcysteine (NAC) which helps. It can combine with glutamate (excitatory neurotransmitter) and glycine to form glutathione, which could help in reducing glutamate levels. Some people need glycine instead of, or in addition to, the NAC. I take 600mg of Jarrows extended release three times per day - for sleeping, the one right before bed time seems most important.
  5. Joanne60

    Joanne60

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    Excellent post. Thank you.
    On the subject of an infectious cause of ME/CFS I asked further about ME/CFS and Lyme Disease. There are a growing number of cases of ME/CFS that turn out to be suffering from Chronic Lyme Disease and progress has been made by many on long term antibiotics.
    Even if this is only a small percentage of the total cases of mE/CFS it needs to be properly investigated which is something that doesn't currently happen.
    I e mailed Dr Kenneth Friedman of SFSAC some time ago and this was his reply 'In the United States, two studies indicate that approximately 30 percent of CFS/ME patients actually have Lyme Disease. Getting physicians to re-check their patients is not easy. '
    This is a presentation by Dr Samuel Shor a CFS doctor in which he discusses his study CFS/Lyme Disease http://lookingatlyme.blogspot.co.uk/2012/05/samuel-shor-presentation-on-lyme.html

    This was my post on the Talk Health forum - while predictably Dr Shepherd repeats the same outdated stance Dr Miller's comments are interesting in that he accepts that the JLA found many uncertainties. For more information about the JLA research visit http://www.lymediseaseaction.org.uk/
    http://www.talkhealthpartnership.com/forum/viewtopic.php?f=493&t=4822
  6. Dolphin

    Dolphin Senior Member

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    I know a friend told me in the medical school he went to (Trinity College Dublin) in the 1990s, trainee doctors did a statistics course but they didn't have to pass it. Don't know the situation in other medical colleges - I imagine they don't spend that much time on such stuff. At that stage, the medical course was six years long (most medical courses in UK at the time were five years) while the Trinity College Dublin course been shortened now and postgraduate medical courses tend to be only four years.
    SOC and Valentijn like this.
  7. Mya Symons

    Mya Symons Mya Symons

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    Hmmm. I have had a high C-Reactive Protein and a higher than normal sedimentation rate since I was first diagnosed with Fibromyalgia (I was diagnosed with CFS a few years earlier). Does this mean I do not have Fibromyalgia and Chronic Fatigue Syndrome?

    I think I will avoid this online site because the misinformation will be too much for me. I don't think anyone, even medical experts, can give definite answers on the causes and treatments for either CFS or FMS because no one is 100% sure on what causes either yet. I still don't understand how a doctor or so called expert can give out advice on FMS/CFS and be so sure of themselves.
    Valentijn likes this.
  8. ~ Ariel

    ~ Ariel

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    Hi, Valentijn,

    Many thanks! I am looking into it.
    Mind answering a few questions ( aware this is totally "off-topic"!)
    Which brand do you take? - are the caps/gels relatively small ( can't swallow large caps, because of vey swollen lymphs)~ also, I am extremely sensitive to smells; some reviews report capsules/ gelules smell awful ( sulphur). Is it so, in your opinion? - Others report feeling worse initially for a while, because of detox effect. Was that your experience? -

    Coming back to your report, I found it truly enlightening, many thanks again for this amazing service to the community ;-) ~ I also learned much from the NHS forum - This thread in particular was of great interest to me (shock, horror, probe!) : http://www.talkhealthpartnership.com/forum/viewtopic.php?f=490&t=4582&sid=f459f819b8488bf766d577ac89f75dd2
    Reading the intro of " Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial" was an eye-opener!
    Being quite liminal in respect of the NHS, I wasn't aware that there existed in the UK such drastcially opposed schools of thoughts re CFS , (defined in the randomised trial as: SMC, APT , versus the CBT/GET approach)- leading ,as I see it, to a random " lottery" situation for sufferers - "pot luck", as to which view is promoted and consequently which treatment is offered by individual practitioners - what about personnal choice?!
    While appreciating other folks may think diferently, I feel SO lucky that my doctor adheres to the "SMC/ APT "school : 15 years down he line, these approch feel so congruent with my intimate experience !
    Reading some of the postulations behind the CBT/GET treatments, notably:
    " altered perception of effort consequent upon reduced physical acticity ", "reversing conditioning", " a change in the perception of effort is involved"(!!!) and " "participants are encouraged to see symptoms as temporary and reversible"( I wish!!!!) - I was horrrified, and share the witty view expressed there by ChrisofCabra: "If I wasn't being economical with emotions to save energy I'd be horrified...a therapist would have to make a very good case for why I should consider it anything but insulting...For my "altered perception of effort" to be that marked as to account for my level of pain, weakness and lack of stamina and me not to realise it, I suggest I'd have to have a brain as internally divided as Syria. "

    Over out, have a good day !
    peggy-sue and Valentijn like this.
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Whilst I would like doctors to have a decent understanding of, and interest in, medical science, from my own experience I don't think I would want to insist on them passing a course on statistics. I managed to get a top-grade Masters degree in medical science with only a cursory ability to do stats - complex, highly-abstract maths makes my head spin!
    Valentijn likes this.
  10. Valentijn

    Valentijn Activity Level: 3

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    I've answered that now at http://forums.phoenixrising.me/index.php?threads/n-acetylcysteine-nac.25176/ so we can chat about it there instead of here. :D
    That certainly could have been Myth #11: If CBT/GET fails, it must be because either the patient is doing it wrong or the practitioner is doing it wrong. Odd how they never explore whether CBT/GET actually works, in a sustainable and objective manner!

    It also has the effect of blaming the victim: either the patient or the doctor (often with good intentions) who has been sucked in by the psychosomatic propaganda must be not trying hard enough or is messing up due to incompetence or a lack of proper training. Regardless, CBT/GET is always held to be faultless by its proponents, and the conclusion is that non-responders must need more CBT/GET and/or a slightly different form of CBT/GET.
    It can also get more complicated, in the context of PACE especially, because GET (and CBT aimed at GET) now incorporates traditional pacing is a first step to get to a stable baseline prior to starting the graded aspect. And the pacing used in the trial was not traditional pacing, but with a rather low ceiling imposed (70% of limitations). Hence I have to wonder how much of the "improvement" in the GET group was attributable to the graded aspect, and how much was the result of the pacing aspect - and how many of the patients made it past the pacing stage and into the graded stage. It also would have been nice to have a real pacing group for comparison, especially if something objective (like heart rate via pulse oximeter) was used to determine limitations.
    Agreed - it suggests that those therapists have a complete disconnect with reality and their patients. It seems to be the result of a very dogmatic approach to ME/CFS: they have pre-determined that CBT is the cure (with GET being used for purely psychological reasons), and have warped their view of all symptoms and responses to comply with that dogma. Any contradictory evidence is either ignored or contorted until they can explain it away.
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  11. Valentijn

    Valentijn Activity Level: 3

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    I had to take a statistics class for my undergrad degree, and it was rather hellish - I think they dropped it the next year. But for certain professionals, I think there can be a compromise. Instead of having to learn how to actually do everything and produce the statistics, they could be trained in just learning how to understand statistics, and the basics of how they are produced, without getting into the more complicated aspects of the mathematics involved. And they should certainly be learning how to thoroughly and skeptically read research relevant to their profession :p
    SOC, MeSci, Dolphin and 1 other person like this.
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Definitely, and especially what equates to statistical significance in most situations in medical science papers, viz. p < 0.05. And the meanings of specificity and sensitivity, false-positive, false-negative, etc. I don't know if they are taught these things, but I have been shocked at doctors' ignorance of basic human biology sometimes. (I will freely admit that my knowledge of anatomy is patchy, but at least I know my anus from the synovial hinge joint between my humerus, radius and ulna.)
    peggy-sue and Valentijn like this.
  13. Roy S

    Roy S former DC ME/CFS lobbyist

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  14. Valentijn

    Valentijn Activity Level: 3

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    I think I had a couple backups, in case one of the top 10 didn't work out :p
    ukxmrv likes this.
  15. Firestormm

    Firestormm Guest

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    More than a couple methinks :snigger:
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  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Excellent job, V!!
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  17. Purple

    Purple Bundle of purpliness

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    Hi Ariel,
    You may be interested in watching the following videos which summarize some of the results of the PACE trial in an accessible manner (if you are able to watch videos): http://www.youtube.com/user/MEAnalysis/videos?flow=grid&sort=da&view=0
    The videos are between about 2.5 and 6 minutes long.
    Valentijn and Dolphin like this.
  18. ~ Ariel

    ~ Ariel

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    Hi Purple ~ Thanks!
    I am sometimes able to watch videos.
  19. WillowJ

    WillowJ Senior Member

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    I believe a beginning course in statistics is required in the US for pre-med, pre-dental, and life sciences and as a prerequisite for medical school.

    At my school, I am unsure whether that one had to be passed like a course in one's major/minor with a B (or c+? if one had only one those or something like that) or better, or like a general studies course with, not sure the lowest acceptable grade, a C or C- or D or something.

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