The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

#MillionsMissing UK Protest Demands - Survey

Discussion in 'Millions Missing Campaign' started by L.A. Cooper, Aug 18, 2016.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    What event is that? Is it another conference call? Not all are able to cope with such a thing and I don't think I'd consider it to be a widespread canvassing of opinion.

    I hope I don't sound critical! I think you're doing a great job under the horrible circumstances of being very ill and this is all a bit of a learning curve for us all. We're such a scattered group that this is all very difficult.
     
    Luther Blissett likes this.
  2. L.A. Cooper

    L.A. Cooper

    Messages:
    21
    Likes:
    84
    UK
    Yes, it is a conference call, it's the only way to manage it unfortunately. I do understand that many will not be able to attend, and I myself find them extremely difficult. But given the situation and that we're all very widespread, conference calls are the way to go.
     
    Luther Blissett likes this.
  3. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,947
    England (south coast)
    My understanding is that the NICE guidelines are on the static list indefinitely, so they won't be reviewed for the foreseeable future. Perhaps they intend to review their place on the static list in 2017?

    My opinion is that there's little point reviewing the NICE guidelines right now. Even if PACE, or any part of it, were to be retracted (and I doubt if that will happen soon), there is still the other psycho-social evidence that supports CBT/GET, that NICE used to create the current guidelines. (They didn't use PACE for the current guidelines.) There's no peer-reviewed evidence for harm from GET, so we might not be able to convince NICE that GET is harmful. I think the most we might expect from an immediate nice review is for them to emphasise (more than it is now) that CBT/GET are not primary treatments and are not suitable for all patients. I honestly wouldn't expect anything radical to come from a NICE review, because they rely entirely on peer-reviewed evidence.

    For the protest, I wonder if it might be best to focus on one or two easy-to-grasp demands that have a political element to them rather than being purely bureaucratic? For example, a NICE review is purely a bureaucratic issue (it can't be influenced by politicians or public pressure) so might not be the best focus. Whereas calling (for example - just off the top of my head) for an inquiry into the treatment of ME patients, or calling for more research funding, might be something that politicians can get behind and influence.

    Just my thoughts.
     
    Last edited: Aug 18, 2016
  4. Keela Too

    Keela Too Sally Burch

    Messages:
    900
    Likes:
    3,986
    N.Ireland
    Agree with Bob. One clear message.

    Millions are missing living their lives due to ME, so funding for biomedical research urgently needed.
    Maybe compare per head funding for other similarly disabling diseases.

    Research now.
     
    BurnA, MEMum, Cinders66 and 3 others like this.
  5. AndyPR

    AndyPR Senior Member

    Thank you. Not sure I'd trust my GP to make a competent decision in that regard but she's the best I've been able to find so far. I agree with the principle of the idea.
     
    Luther Blissett and L.A. Cooper like this.
  6. L.A. Cooper

    L.A. Cooper

    Messages:
    21
    Likes:
    84
    UK
  7. AndyPR

    AndyPR Senior Member

    From the MEAction UK Facebook page - www.facebook.com/MEActNetUK/
    Link to the post itself, https://www.facebook.com/MEActNetUK/posts/1663537133964243
     
  8. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    Thanks to all who worked on doing that survey. Good to see this moving forward. :thumbsup:
     
  9. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,947
    England (south coast)
    I really appreciate the efforts being taken here, and I'm aware of how much time and effort any project like this requires. I think the focus of the campaign could be tightened somewhat, and perhaps the strategy could be refined to define 1) who exactly the campaign is aimed at, 2) the message we want the recipient to receive, 3) what changes we want them to implement, and 4) how we expect them to implement the required changes, 5) what tools or info we can provide to assist the changes, 6) who else might be able to assist with the project (e.g. the media, charities, etc). I'll lay out some of my thoughts below, in case helpful to anyone.

    If an 'independent' review of PACE were carried out by researchers appointed by QMUL or the MRC, then we could end up in a worse situation that we are now, as it's more than likely that a superficial review would confirm that, for example, the PACE recovery analysis was carried out correctly as per the published results paper. The Cochrane analyses (i.e. independent reviews) have already concurred with the published PACE outcomes. So I personally think calling for an independent review could be misguided and potentially counter-productive.

    However, any academic could carry out an independent analysis of the data (e.g. as per the published protocol) if QMUL were to release the data. So, personally, i would focus only on obtaining the data rather than calling for a review that could end up being a stitch-up.

    I wonder what evidence base would be used to inform GPs of the dangers of GET? As far as I'm aware, nearly all of the peer reviewed evidence from practical research studies demonstrates that GET is harmless. We would need to write a solid piece of literature if we're going to convince the authorities that GET can be dangerous. There is evidence to support the theoretical idea that GET is inappropriate.

    I don't think GET is promoted by NICE specifically as a curative treatment. I'm not sure if the NICE guidelines are specific about outcome expectations for GET? I don't recall them mentioning recovery or cure in the context of CBT or GET.

    Personally, I believe that a comprehensive review of NICE would be fairly fruitless at the current time. In my opinion, the most we could hope for is that ME patients are provided with a more flexible palliative care approach, better suited to each individual. But the NICE guidelines already promote such an individualised approach (e.g. "An individualised management plan should be developed with the person with CFS/ME"); it's just that the guidelines aren't always adhered to.

    There are no proven treatments available for ME so, in my opinion, this simply isn't going to happen. The GMC simply isn't going to permit doctors to prescribe unlicensed treatments for ME, because it would have to make a single exception for us, and it wouldn't get approved by all the bureaucratic layers and hoops it would need to overcome Doctors can already prescribe off-license treatments if they can justify those treatments. I think the most we might expect, after a long and coordinated campaign, is to be able to persuade the government or one of the relevant authorities to take a slightly more flexible approach with ME. But the GMC is a bureaucratic monster with many heads, and isn't going to change anytime soon.

    If a campaign is carried out along these lines, I'd like us to list: exactly what treatments might help people with ME; the research evidence that supports those treatments; and to explain why ME is a special case whereby patients deserve access to potentially dangerous treatments despite there being no adequate level of evidence to support the use of the treatments.

    I wonder if such a campaign would be better directed towards the government, the GMC, NICE or some other authority?

    Does anyone know who is responsible for GP training policy in the UK? (Training universities, NHS trusts, the GMC, the Royal College of GPs, or another body?)




    So, the above list demands:
    1. QMUL to release PACE data;
    2. QMUL, the Lancet or the MRC (i assume) to carry out or fund an independent review of PACE;
    3. A review of the NICE guidelines (the review would have to be requested by the NHS);
    4. Better education of GPs (via universities, NHS trusts, the GMC, or the Royal College of GPs?); and
    5. The GMC to change its rules and make a special exception for ME.

    The recipients of these demands potentially include (but are not necessary limited to) the following bodies:
    QMUL, the NHS, NICE, the GMC, medical training universities, the Royal College of GPs, the Lancet, the MRC, and the UK and regional governments.

    So I wonder who the protest would be directed at? And what message would each public body be presented with?

    Personally, I would think it better to focus a single message towards a single body, with a single aim in mind.

    If we create many demands, all aimed at different public bodies, then most of our demands will be meaningless to most of the people who read them; the impact of the messages would be diluted; it will be confusing and there well be no central message to focus attention on. Also, I would prefer to focus on issues for which political pressure is most likely to effect change. Furthermore, if the media were to be involved then they would require one simple message, directed at a single recipient.

    Anyway, just my thoughts. I hope some of them might be useful. I must admit that I'm not very well informed about strategies for this type of campaign, so I'm going by guess work about what might be best!
     
    Last edited: Sep 6, 2016
  10. JaimeS

    JaimeS Senior Member

    Messages:
    3,205
    Likes:
    11,822
    Mid-Ohio Valley, United States
    I think it would help to define exactly what is meant by 'an independent review' since Crawley stated that the Cochrane was not independent by her definition; this is one of the few times I would agree with her.

    To whom the demands are addressed is a Big Deal.
     
  11. user9876

    user9876 Senior Member

    Messages:
    2,584
    Likes:
    18,184
    I think there does need to be an independent review but we need to be careful in specifying the scope of any review. So if we are calling for an independent review we should be asking for particular things. For example:
    1) publish results according to the original protocol and the stats plan
    2) An analysis of the effects of the protocol changes
    3) An analysis of correlations between subjective and objective variable results

    As Bob says just asking for an independent review could end up with the Cochrane type review where the accept all the protocol changes and then look at it from that basis. I think it is worth noting that Cochrane have not published their review just the protocol. That was some time ago. But the PACE team (who are involved in the Cochrane review) have claimed to confirms their results.
     
    Valentijn, Snowdrop, MEMum and 2 others like this.
  12. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,947
    England (south coast)
    Don't forget that they've published one review of GET for CFS, with a second review pending.
     
    Luther Blissett and JaimeS like this.
  13. user9876

    user9876 Senior Member

    Messages:
    2,584
    Likes:
    18,184
    I hadn't forgotten those. I was meaning the individual patient data review which is taking time but they say this on the MRC website

    http://gtr.rcuk.ac.uk/projects?ref=G0200434
    Under outcomes, Research Tools and Methods

    I think the protocol was published in 2014. So it seems like a very slow process turning that into results.

    I think there is a pending CBT review.
     
    Luther Blissett and Bob like this.
  14. Cinders66

    Cinders66 Senior Member

    Messages:
    417
    Likes:
    1,811
    I fully support a patient uprising and thank those getting involved

    I think the scope of the survey was too limited , questions on GET, PACE, NICE, a specific question on Dr education and one on Dr speight and gp freedom to practise psychologically etc

    I'm not sure how well these Will slogan

    . I am very surprised there's no calls for massively increased and ring fenced research funding in uk as in USA protests, calls for more funding for services currently on shoe string budhets and neglecting the severe and that the more general problems of ME education being lost in a too wooly fatigue of UK CFS, lost on the scrap heap of MUS currently being harmfully psychobabbled about and so on. As well as research I think uk drs need to embrace IOM findings too.

    In uk MRC has given £200,000 in 4 years - not on, in uk Cumbria a new service county wide has cfs listed under persistent physical symptoms and treated by cbt and psychologiSt, not on, few severe have drs with any expertise or services not on and all not mentioned

    I think organising protests is great and thnks but personally hope difficult as i know things are to do , things on the banners and tee shirts can go beyond PACE & Get stuff and will be what the public and newspapers can understand and support
     
    Luther Blissett likes this.
  15. Cinders66

    Cinders66 Senior Member

    Messages:
    417
    Likes:
    1,811
    I'm a bit disappointed with the lack of dialogue on this, bob made good ppints as hAve others. If the demands stay around issues of NICE, PACE and GET alone then as a severely ill sufferer I wont feel that the more general urgent issues around funding, services and generally much improved Dr education and recognition of us having serious dusease are being addressed and I don't understand why more funding for research and services were not included in quite the limited and pre decided, in terms of direction, survey,. I agree with Valentijn that the survey seemed to want to lead direction rather than asking views.

    I think Better service provision is going to cut deeper than having a health professional informing about GET and rituximab, at a basic level many services don't exist at medical level , don't cater for the severe or entrenched at all and have appalling waiting times mainly due to funding shortages and a casual anything goes approach to cfs. The whole uk cfs wide criteria is something else really hampering us I feel, top bit could be summed up with a demand for ME to be recognised as a serious multisystem disease maybe, no more fatigue conflation.

    I agree with most of what Bob wrote, I don't think NICE review, although needed, I would like uk framing the illness as the USA does, works as a demand on a banner as the public and passers by and politicians won't have a clue, although it could go on the list as one if people ask for more detail.

    I am interested in what, if any, role uk charities are playing in this year's protests, Action for ME are attending the Bristol one which they call an awareness event and MEA say th e y are working behind the scenes. Thanks
     
    Last edited: Sep 8, 2016
    Bob likes this.
  16. Keela Too

    Keela Too Sally Burch

    Messages:
    900
    Likes:
    3,986
    N.Ireland
    I think we need some simple memes eg:

    ME patients need REST not exercise.

    Biomedical Research Funding urgently needed.

    Recognise Severe ME
     
    mango, BurnA, Bob and 2 others like this.
  17. JaimeS

    JaimeS Senior Member

    Messages:
    3,205
    Likes:
    11,822
    Mid-Ohio Valley, United States
    Yes, simple messages are best.
     
    mango and Keela Too like this.
  18. JaimeS

    JaimeS Senior Member

    Messages:
    3,205
    Likes:
    11,822
    Mid-Ohio Valley, United States
    (she says, in 5 words!!!)
     
  19. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,863
    This is really all we need, neatly summed up in two posts by @Keela Too


    I dont see why we need surveys and why we would want to drag PACE data into this at all. That wont make us better. The story is about sick people with ME and no biomedical research.
     
    Keela Too likes this.
  20. Cinders66

    Cinders66 Senior Member

    Messages:
    417
    Likes:
    1,811
    I agree. There is a thread discussing this on uk #MEACTION page too
     

See more popular forum discussions.

Share This Page