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NICE : "Do not do" recommendations for (not) treating ME/CFS

Discussion in 'General ME/CFS News' started by Valentijn, Apr 3, 2014.

  1. Valentijn

    Valentijn Activity Level: 3

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    http://www.nice.org.uk/usingguidanc...rch.jsp?action=dndByGuidance&guidanceId=11824

    I haven't seen this mentioned here before, and it looks like it was just updated a few days ago. NICE says no testing for OI, no testing for or treating viruses, no testing B12 or folate levels, no MAO inhibitors, no glucocorticoids or mineralcorticoids, no rest in response to symptoms, no vitamins/minerals/supplements should be prescribed, etc, etc.

    Basically no useful testing or treatment for ME/CFS patients except for CBT/GET from an experienced therapist.
    Last edited: Apr 3, 2014
    Wildcat, ahimsa, brenda and 3 others like this.
  2. peggy-sue

    peggy-sue

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    Is there also not a "do not allow" blue badges for cars, or wheelchairs for mobility - because this "discourages us" from doing things, rather than aid us to do more. (which they do)
    Valentijn likes this.
  3. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    Who are these idiots? You know, I'm kind of surprised that some really sick person hasn't totally lost and and "went postal" on some of these people.
    PennyIA, NK17, leela and 5 others like this.
  4. Cheshire

    Cheshire Senior Member

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    That's just insane !! It reminds the thread Tom Kindlon just posted about the Netherland policy of CFS:

    http://forums.phoenixrising.me/inde...erlands-report-on-cfs-2005.29397/#post-448814
  5. Cheesus

    Cheesus Senior Member

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    Assholes.

    :eek:

    One thing that actually stood out at me about that is the continual use of the word 'he'. I really dislike constantly using male personal pronouns, and it seems especially odd in the context of a disease with a disproportionate amount of female sufferers.
    greebo, leela, alex3619 and 1 other person like this.
  6. Nielk

    Nielk

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    I equal this madness to a doctor telling a person with an amputated leg to just walk normal, and to go for counseling which will make him better. As if CBT would bring his leg back!

    CBT for ME is like for any organic chronic illness; at best it might help with some coping skills in a very difficult situation. It has no healing power though for the healing process.

    Moreover, to object to possible treatment for the organic issues is purely criminal!
    PennyIA, justy, NK17 and 7 others like this.
  7. lnester7

    lnester7 Seven

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    I really need to know who is represnting us legally / at goverments levels. Can somebody send this to the press list we have???? We need to fight back with all we have, until then we are subject to this kind of crap that does not help anybody.
    leela and Valentijn like this.
  8. Legendrew

    Legendrew Content team

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    I'd prefer if they put a 'we don't know yet but we're working on it' under the diagnosis, causes and treatment sections, I think many would prefer that to the spouting of this sort of thing which everyone knows is utter rubbish anyway...

    You'd have thought that following many other diseases such as MS and many more being treated like this prior to a better understanding of the disease, authorities would learn that it's acceptable to put a 'we don't know' when you don't. I guess that the powers that be want to give the impression that they are all knowing omnipotent beings when in truth they just don't want to appear empty handed.
    Last edited: Apr 3, 2014
    Mij, leela, alex3619 and 2 others like this.
  9. SOC

    SOC Moderator and Senior Member

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    So if you're in the UK, you have to do everything possible under the sun NOT to get ME or CFS in your record as that's a sign for any UK doc to ignore any symptoms you have. If I were there, I'd be fighting tooth and nail to get "ME/CFS" off my record.

    So if you have OI symptoms, you must not have ME/CFS, since PWME can't have OI, apparently. Take ME/CFS off your record. If you have neurological symptoms, you can't have ME/CFS according them them, right? Take ME/CFS off your record.

    It's shocking that doctors are told not to test people with known symptoms simply because a certain word (acronym) is written in their file. The lack of logic is appalling.
  10. Firestormm

    Firestormm Guest

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    Compare to some of the things in this:

    Social Security Ruling, SSR 14-1p; Titles II and XVI: Evaluating Claims Involving Chronic Fatigue Syndrome (CFS)

    I started to read through it after receiving it via co-cure earlier today, and thought how different it was to NICE in some respects. Didn't manage to read it all, and I suppose it should really be compared to the Department of Work and Pensions guidelines (I presume they have something about ME/CFS), but I did notice mention I think of OI and viral loads (in the absence of anything else). Might be wrong. Probably am. One of those days :)
    Valentijn likes this.
  11. maryb

    maryb iherb code TAK122

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    Wessley will be doing high fives with himself..............
  12. Firestormm

    Firestormm Guest

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    I meant to say, the exclusions or 'do not carry out specific tests for' have been part of the Guideline since it was first published in 2007 though maybe not as specific as some of the examples you provide (I'd have to check), but tilt-table testing was one they didn't advise using - I remember that - and the others you mention before MAO inhibitors...

    Don't forget Vitamin D levels ;)
    Valentijn likes this.
  13. Legendrew

    Legendrew Content team

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    Looking back my last GP, who has unfortunately moved away, removed CFS from my record (stating it had been excluded), I wonder whether he was doing so to ensure I could get further treatment and testing going forwards. He was very critical of the diagnosis of ME/CFS and agreed with me that it was an unhelpful diagnosis for both the patient and the physician, basically saying that we don't know what is going on but giving me the diagnosis would be worse than not.
    SOC and Esther12 like this.
  14. peggy-sue

    peggy-sue

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  15. Firestormm

    Firestormm Guest

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  16. peggy-sue

    peggy-sue

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    That was 2007. I found a bit in that link, Russ, which is contradictory to their latest stuff.

    1.4.4.1 For people with moderate or severe CFS/ME, providing or recommending equipment and adaptations (such as a wheelchair, blue badge or stairlift) should be considered as part of an overall management plan, taking into account the risks and benefits for the individual patient. This may help them to maintain their independence and improve their quality of life.
  17. Firestormm

    Firestormm Guest

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    I don't think what Val posted is anything different to what is in the Guideline already, Sue. Just a different way of presenting it - a new system I think.

    There are things in the Guideline that aren't so bad. But I guess this new system/whatever is a 'handy' way for people to see 'what not to do'.

    Although if you ask me there is way too much information already out there e.g. map of medicine, full guideline, various summary guidelines... the diagnosing physicians must feel rather overwhelmed by the same information being repeated.

    Any actual change in the Guideline cannot occur arbitrarily, it has to happen at a review. And 'we' are now on the 'suspended' list (can't remember the actual name right now, but it means our next review wont be until 2015 at the earliest I seem to recall.

    I mean check by all means, but I don't believe anything on the 'new system' is different to the full guideline. But I am shattered so can't be arsed to do it myself right now :)
    peggy-sue likes this.
  18. peggy-sue

    peggy-sue

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    A lovely lady called Dolphin Sezzy on another forum I was on knew what NICE truly stands for.

    Nincumpoops Implementing Crap Evaluations.

    Russ, it was me who said that blue badges and wheelchairs should not be offered, adding that to the list of "do nots" - I didn't provide a reference for it, but I'm postive it was in a posting by Valentijn recently.
    Thus, I was surprised to see they were allowed in 2007.
  19. Valentijn

    Valentijn Activity Level: 3

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    The mobility stuff posted by Cheshire is from the Dutch recommendations, not NICE.
    peggy-sue likes this.
  20. peggy-sue

    peggy-sue

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    Aaargh. :bang-head::bang-head::bang-head:
    Thanks for sorting me out, Valentijn. :love:
    Apologies for muddling everything, everybody.:redface:
    barbc56 likes this.

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