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!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

NICE Guidelines Review - Aug 2013

Discussion in 'General ME/CFS News' started by user9876, Aug 26, 2012.

  1. user9876

    user9876 Senior Member

    Messages:
    684
    Likes:
    1,548
    BACME seem like a terrible organisation. There is very little information on their web site but I believe they are chaired by Esther Crawley so you can guess their views.

    They describe the PACE trial as
    I expect they will be lobbying NICE for CBT and GET.
  2. alex3619

    alex3619 Senior Member

    Messages:
    6,651
    Likes:
    9,746
    Logan, Queensland, Australia
    Hi, one of the other terms used is auto-inflammatory. Bye, Alex
  3. Esther12

    Esther12 Senior Member

    Messages:
    5,091
    Likes:
    4,867
    It is pitiful that we have NHS staff being 'educated' by an organisation whose chair claims that PACE showed a 30-40% recovery rate for CBT/GET. No wonder so many patients ended up being treated so badly.
  4. biophile

    biophile Places I'd rather be.

    Messages:
    1,350
    Likes:
    3,988
    One wonders how a non-blinded trial without placebo control "represents the highest grade of clinical evidence". If PACE was a drug trial or a study on CAM, such a statement would be met with laughter.
    alex3619 likes this.
  5. Firestormm

    Firestormm Senior Member

    Messages:
    5,786
    Likes:
    5,869
    Cornwall England
    Morning Alex,

    I don't want to get into it about these potential treatments specifically, but any attempt to suggest that Rituximab if the clinical trials prove successful will prove ME = X are unlikely I would suggest to be considered by NICE or anyone else. Simply put with both Rituximab and Ampligen we just don't know what they say about what ME is (or isn't) for that matter.

    NICE will I understand only consider research evidence that moves the understanding forward and is likely to fundamentally change the existing Guideline in some way. I can't really see how this might happen for either of the two drugs you mention at this time. I'm also not sure what effect XMRV might have had on matters pertaining to research that takes understanding in a new direction.

    I wonder though what would happen if either Ampligen or Rituximab were 'approved' for use there must be some way in which NICE can review their Guideline in between the usual four year period.
  6. Firestormm

    Firestormm Senior Member

    Messages:
    5,786
    Likes:
    5,869
    Cornwall England

    Thanks. I did read all of their report when it was published. It was of course shocking but hardly a surprise. What struck me as also very sad was the simple fact that they had to resort to FOI requests for any of this data. However, it does reveal the extent to which the Guideline has simply not been implemented or even honoured across the country. There's no 'gold standard' service. Cornwall used to be thought of as one - and I think so did Leeds and South Tynes (?) - but we have both been altered terribly by recent cost-cutting and low priority neglect.

    It's that that I'd like to try and focus on personally but I suspect implementation of the Guideline might be beyond the Review itself. Could be that any efforts attempting to address this would best be made to the 'new' health committees and/or GP commissioners in our localities. Unfortunately, as with the National Service Framework for Long term conditions (prior to it being made irrelevant) there is no accountability for a failure to implement. Unless you are able (as a patient group) to push for and/or self-fund an 'audit' and even then you can only hope that the commissioners do something about any findings - and in Cornwall they certainly haven't. It's all fudge.
  7. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,856
    Scotland
    Can I interject a tiny bit?
    The main concern of NICE is money and cutting costs.
    Not providing services.

    They are going to be overly interested in the paper which says GET&CBT are best value for money.

    Know your enemy.

    I can't help wondering about all the incredibly valuable CBTherapists who are wasting their careers on this, when they are so short of therapists in areas where they can be of use.
    I put a request to my gp for emergency counselling when my Dad was diagnosed with pancreatic cancer and I was "going under" trying to care for him, but in charge of major life and death decisions.
    I was put on an 18 month waiting list.
    When a drug addict (including alcohol) decides it is time to quit and they need help, they need it NOW, immediately.
    It's a case of strike while the iron is hot.
    Putting these folk on waiting lists will only give the impetus to quit time to dissipate and will reduce the hope of success considerably.

    Would it help in any way to point out that other services could be seriously enhanced by having extra staff?
    Therapists are not cheap.
    alex3619 and currer like this.
  8. Esther12

    Esther12 Senior Member

    Messages:
    5,091
    Likes:
    4,867
    I've not had time to properly think about this thread, but my primary desire from NICE would be:

    i) An acknowledgement that the value and efficacy of cognitive and behavioural treatments for CFS have been exaggerated in a way that has left many patients feeling unable to trust their doctors, and ii) a recognition that CFS patients are now entitled to be spoken to as honestly and clearly as is possible,
    Firestormm likes this.
  9. user9876

    user9876 Senior Member

    Messages:
    684
    Likes:
    1,548

    There is an interesting economic argument here which is when there are limited resources how do you best put them to use. Even using the figures given in their paper the gains are very small so it doesn't make a good use of the limited set of resources. I think you could put a similar argument around GET, I believe that there is a shortage of physiotherapists.

    To a large extent I think that the NICE guidelines around CBT and GET have been ignored. The damage they do is they impression they give to doctors. I believe that in the nice guidelines they say CBT and GET can be useful in helping manage ME. However, there is so much publicity around PACE and claims of recovery that doctors havn't got that message. Its particularly dangerous when doctors tell people to go and do some exersies. Or paediatricians start "graded attendance therapy" where the get parents to force children to attend school and gradually increase attendance even when it makes them ill - using the threat of child protection proceedings to do this.

    This started me thinking what simple goals do we want to achieve. I wrote down a few goals as they occured to me to start a discussion:

    1) Change the description of the disease to state evidence for immune system failures and neurological problems (as suggested in the latest highlight notice from the MRC). This could be critical in changing the perception of ME.

    2) State clearly that there are currently no effective treatements just management strategies. They should point out that management strategies should be choices for patients. I would include pacing, GET and CBT here - I don't see them dropping CBT and GET hence I think it is important that they emphise the lack of recovery data. I also think management should include advice on pain (inc drugs), diet, vitamin suppliments etc

    3) A commitment to review Rutiximab and Ampligen when further trials are completed and FDA approval given.

    4) Strong statements around the dangers of exersise and things like graded attendance therapy particularly when badly managed. This kind of statement is supported by evidence of patients experiance from the MEA surveys and I believe that White or Sharpe acknowledged in an interview that exercise can be dangerous when badly managed. These statements should be backed up with pointers to evidence of immune system changes on exersise.

    5) They need to say that patients with ME should not be sectioned.

    6) They need to say that children with ME should not be subjected to child protection proceedings. I think the advice given in the 2001 CMOs report was quite good here.

    7) Better differencial diagnosis - There are a number of papers around suggesting people getting to CFS centres should have had different a diagnosis (inc things like depression and sleep disorders), so I think work needs to be done here.
    alex3619 likes this.
  10. user9876

    user9876 Senior Member

    Messages:
    684
    Likes:
    1,548

    I think it will be really hard to get an acknowledgement of their failures - people don't like to admit they are wrong particularly when they have built there careers on it.

    It might be easier to get them just deemphasise these treatments and emphisise evidence of biological mechamisms.

    The point i'm trying to make is we need to think through the politics and tactics.
  11. Esther12

    Esther12 Senior Member

    Messages:
    5,091
    Likes:
    4,867
    It's something which we could so easily show is true though! That should matter more than the desires of those in power to promote a narrative which is favourable to themselves and their interests. Also... it's more a failing a certain researchers than NICE. Personally, I don't think NICE have been too bad given the state of CFS research.
  12. user9876

    user9876 Senior Member

    Messages:
    684
    Likes:
    1,548
    I agree its stuff we can easily show. The problem with NICE is there will be supporters of PACE such as Esther Crawley on the guidelines development committee. so I think its about trying to manage their influance - for example pointing out evidence of the effects of exercise on the immune system.

    I believe that over the next few (5) years a much better understanding of ME and its causes will emerge. I think there should be a leverson style public enquiry then into how the psychiatrists managed to kill off research and abuse patients for so long.
  13. alex3619

    alex3619 Senior Member

    Messages:
    6,651
    Likes:
    9,746
    Logan, Queensland, Australia
  14. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,856
    Scotland
  15. Esther12

    Esther12 Senior Member

    Messages:
    5,091
    Likes:
    4,867
    I don't know much about the processes which occur around NICE, but hoped it would be more independent than that. Drat.
  16. alex3619

    alex3619 Senior Member

    Messages:
    6,651
    Likes:
    9,746
    Logan, Queensland, Australia
    Hi peggy-sue, I like both those papers, and I think that research like this must be taken into account. However, its far more important in a review like NICE to refer to things with some evidence of clinical effectiveness. Treating ME as an O&N stress disorder still has a lot of research to go for clinical use - they are still mostly theoretical models. It is good though that Maes and Twisk are comparing againt the (bio)psychosocial model, and also good that it brings in discussion of O&N stress, a major finding in ME and CFS. Its also worth noting that the work of Leonard Jason on definitions help define the usefulness of studies using the Oxford definition. Bye, Alex
  17. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,856
    Scotland
    :redface:
    I'm still only brainstorming, Alex! Yes, I love those papers too but - have you any idea the trouble I had finding them? Even though I knew of their existance? (It's easy enough to find the weasel's model.:mad: )

    I still think the best way forward would be to point out that the current situation is NOT "good value for money"......
    detrimental in the long term - and costing more in the long run.

    But the facts and figures would have to be found and worked out.

    And the "cost" in the long term could be a difficult one - given you'd have to consider which budgets were relevant.
    NICE may not be concerned with the cost of welfare benefits.

    It needs to be kept short and precise - and grab their attention.
    alex3619 likes this.
  18. Esther12

    Esther12 Senior Member

    Messages:
    5,091
    Likes:
    4,867
    It does look rather less independent than I'd hoped.

    http://www.csp.org.uk/frontline/article/fighting-fatigue
  19. Esther12

    Esther12 Senior Member

    Messages:
    5,091
    Likes:
    4,867
    I don't know how realistic this is, but it would be good if patient organisations were to request that those on the committee not be those who want top be paid for the provision of certain treatments.
  20. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,856
    Scotland
    As in conflict of interest? :thumbsup:
    That's a good one to bring up!
    Whether or not it will be noted is another matter....

See more popular forum discussions.

Share This Page