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NICE Guidelines Review - Aug 2013

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

  1. user9876

    user9876 Senior Member

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    Moderator note:

    This thread, to discuss preparations and advocacy efforts in relation to the NICE Guidelines Review (due in Aug 2013) was spun off from a discussion on a PACE Trial thread

    According to this page, a new group, NCGACC, will be reviewing the guidelines in Aug 2013
    http://guidance.nice.org.uk/CG53

    Contact here:
    http://www.ncgc.ac.uk/Contact/

    About them:
    http://www.ncgc.ac.uk/About/

    Methodology for the review:
    http://www.ncgc.ac.uk/Guidelines/Methodology/



    I think there is an argument to simply dismiss the PACE findings saying the small movements clearly disprove their original behavoiural and deconditioning theories.We need to have justifications but not necessarily go into all the detail all the time.

    Then the emphasis should be on promoting other results such as Fluge and Mella, work on natural killer cells and Apligen as a demonstration that there are clear issues with the immune system and that these should form the basis of future treatment plans.

    The big question is who will be on the NICE guidelines committee since this will determine the outcome. Remember those shouting loudest about evidence based medician are those most willing to ignore evidence that doesn't fit their theory.

    Ideally NICE would be in a position where it will be too embarasing for them to dismiss all the new evidence as they know sucesses in other countrys will be noticed as will their failure to look at new evidence.
    Bob likes this.
  2. Firestormm

    Firestormm Senior Member

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    Those on the committee remain unchanged from last year I understand. I'd need to check but even the committee at the end of the NICE Guideline hasn't changed I don't think.

    The point is how will the Review treat the PACE findings and the cost-effectiveness paper? And what will be the response offered by the main charities when the 'opposition' (for want of a better term) seek to use PACE as they seek to use it?

    How will PACE and this latter paper be used in the NICE Review? Know thine enemy :) And then try and prepare accordingly.

    I think (I suggest) we stick to the PACE trial findings and the therapies that they addressed. Other issues, other research findings will be used (if at all) for other aspects of the Review.

    I do recall last year when the Trial was released how nonplussed NICE seemed to be. It might help to know what the original intention behind PACE and all the expenditure actually was - I believe 'safety' was one aspect of this.

    Depending on what others have to say, any defence might seek to counter claims that PACE results continue to support the use of these interventions.

    I think any defence needs to be specific and therefore relevant. These therapies are in NICE seen as 'management strategies' and are do not (from memory) carry quite the same expectation re: recovery as was embedded in PACE.

    Maybe we could think about the how PACE might affect the current Guideline? I mean it will not alter the advice for severe patients because NICE and PACE never embraced severe patients in this regard. So that will remain unchanged.

    So what might PACE change that is already a part of the Guideline? And what would you want it to change?

    It could be for example, that they seek to lessen the stress placed on a 'tailored' approach to therapy, and seek to introduce the PACE manuals for one and all. I don't know...

    But all that I said could be bollocks. So what do others think we should do?
    Bob likes this.
  3. user9876

    user9876 Senior Member

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    The
    The point I was trying to make is that we need to make sure the new evidence around the immune system cannot be ignored.

    I'm not sure how the committees work but my guess is that they won't take evidence from patients seriously especially when it contradicts their previous opinions.

    Given limited effort I wonder if there is more value in trying to get storys about the sucess with Rituximab into the press than complex storys around how bad the PACE trial was. Doing something like this would help set the context for the NICE committees decision making.

    I do think some effort is needed on the PACE trial, and people have already put in a huge effort to show their many failures. I just don't know how we can communicate this well. One good thing in the economic costs paper is that they set out their hypothesis very well. One thought would be to have a co-ordinated campaign based on the way they have spun results, issued misleading press releases and calling for the publication of data, stering committee meetings, the statistical analysis plan and discussions in generating them. Perhaps a massive email to MPs, Lords along with press releases. But we need to think about appropriate sound bites.
    alex3619, Bob and Firestormm like this.
  4. Mark

    Mark Acting CEO

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    I'm pleased to see the focus on the NICE guidelines review. I do think it is time to start preparing for this. It's so fundamental, perhaps the most important document that affects the real-world experience of ME/CFS patients worldwide, given that the NICE guidelines are used by many other countries around the world as the basis for what they regard as 'best practice'. So it's vital that we ensure that the proper evidence is provided to those conducting the review, and make a reasoned case (without being too ambitious or emotional in our arguments) for changes to the guidelines.

    I looked into the NICE guidelines review recently and here's what I found:

    A new group, NCGACC, will be reviewing the guidelines in Aug 2013
    http://guidance.nice.org.uk/CG53

    Contact here:
    http://www.ncgc.ac.uk/Contact/

    About them:
    http://www.ncgc.ac.uk/About/

    Methodology for the review:
    http://www.ncgc.ac.uk/Guidelines/Methodology/

    I suppose the first things to do are to contact them with preliminary enquiries about how and when to register as stakeholder, and try to find out who might be worth providing evidence too even at this early stage. It may not be decided yet which of their staff are going to be conducting the review, but there may be some way to find out a best guess of who is most likely to be involved.

    I think that any lobbying really needs to focus on ensuring they are provided with evidence in plenty of time for them to consider it, rather than opinion/rants: any decisions they make will have to be evidence based. At the minimum, it seems essential that all panel members involved in the decision must have
    - printed copies of the IACFSME primer together with description and references regarding who is using the primer in the US and elsewhere
    - printed copies of Margaret Williams' review of "the immunological basis of ME/CFS (documented immune system abnormalities 1983-2011)"
    - printed copies and references to the most intelligent critiques of the PACE trial methodology and findings.

    They must have those documents, sent to all panel members in print, with sufficient time for them to read and absorb the material and follow it up with further research.

    They also need updating with the latest scientific evidence and of course we don't know what that will be yet. Unfortunately it's unlikely there will be sufficient scientific evidence to recommend a specific treatment by then - the Rituximab study is too small to support a NICE recommendation and there doesn't seem to be an adequate follow-up coming in time for Rituximab to even be put on the table. It should be feasible to put Rituximab and Ampligen on the agenda though: the expense of the treatment will probably rule it out as a NICE recommendation but I think it would be valuable to oblige the panel to review that evidence just because it may affect their attitudes: they will see that there is clear blinded evidence of effective drug treatments and that alone should help them understand that they are dealing with an immune/auto-immune disease that is at least potentially treatable through such therapies.

    Unless there is some breakthrough research ahead of August 2013 which enables another treatment strategy to be recommended by NICE, I'm afraid the realistic objectives are rather limited. So I think the targets should be realistic and achievable ones:

    - A first objective to make sure the review scope includes advice, education and training for physicians on the true nature of the condition, not just recommended treatments. This is crucial. The first phase of their work focuses on the scope of the review, and stakeholder feedback on that stage is solicited. We must ensure that the scope is not limited to treatments, nor to new scientific evidence since the last review. If it is, we have lost before the review even begins.
    - Then an aim to get the guidelines to describe the illness more accurately, and put information such as the IACFSME primer in front of physicians - if the description of ME/CFS in the guidelines could be based on the primer, and the primer was linked to and recommended in the guidelines, that would be great.
    - Ideally, an aim to get some of the other treatment strategies mentioned in the NICE guidelines - for example, mention of protocols like B12 + L-carnitine + Co-Q10 + other supplementation (which does have a fair amount of evidence supporting it now I think). It should be possible for the guidelines to at least refer to some of these options even if it is cautious in its recommendation.

    I guess my post should be in a separate thread on planning for the NICE guidelines review, so if anyone wants to start one, let us know which posts to move into it.
    ukxmrv, Bob and Firestormm like this.
  5. Firestormm

    Firestormm Senior Member

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    Mark, thanks for doing some digging old bean. It saves me a job that's for sure. Will take a more thorough look at those links tomorrow I think.

    All, I've written to Charles and asked if in principal he and his colleagues would consider reviewing a submission with a view to endorsing it. We have quite a bit of time and PACE will only be a part of the review of course.

    I am not as associated with the other charities, but I can do something similar for AFME if you like. Although I would personally have more reservations about their response that any other charity - but I would suggest we try anyway - wouldn't want to pre-judge.

    Bob, I didn't read the MEA coverage in that way at all. Well, I don't remember doing so anyway. The way I think they are doing this survey is to present actual experience of these 'management strategies' as opposed to the PACE trial reports themselves.

    It was a complicated survey for someone with our difficulties to complete. Did you manage? Christ I was seeing double on several occasions. Thank Gods they allowed the save ability. I couldn't have done it in one sitting and I needed to go back and forth...!

    Very hard at this stage to consider what the Review panel might be asked to consider in relation to the therapies and more broadly. My main concern I think would be a move to bring the PACE manuals into clinics and to stick to them rigidly, not tailoring the approach or considering if such an approach is best for the patient.

    Perhaps a separate thread is appropriate to consider NICE and what we think needs to be addressed, might be challenged, what is worth defending, etc. might be best?
  6. biophile

    biophile Places I'd rather be.

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    I don't think the 2013 review of the NICE guidelines for CFS/ME will change much on the issue of CBT/GET. To NICE, the PACE Trial will probably confirm their justification for blanket recommendations or offerings for CBT/GET as "safe and effective" for the mildly to moderately affected adults, but it should also substantially weaken the expectations for these therapies and it would be appropriate for them to include clear caveats. There will be room for details in the full guideline, however IIRC, people have previously suggested that hardly anyone reads the full guidelines, so perhaps the focus needs to be on the standard abridged version and/or even the quick reference guide version.

    CBT/GET will still be regarded as the "only proven effective treatments" and/or having the largest evidence base. NICE may even mention internet-based CBT as an alternative. They will probably only discuss Rituximab to discourage its use until further research, even though it had a NNT of 2 and seemed safe. Re the "co-ordinated campaign" and "massive email to MP", LOL, I can imagine that Richard Horton (Lancet) just unexpectedly shuddered for reasons unknown to him! He absolutely loves it when patients get together to criticize the medical establishment or a paper he helped publish and defend. Only people like him are allowed to legitimately question authority. ;-)

    So what to do about the 2013 review of the NICE guidelines for CFS/ME? NNT is a concept nearly anyone can grasp. Patients need to be informed that for every 7-8 patients in PACE, only 1 of them achieved (small)/moderate improvements in self-reported fatigue and physical function. However, apart from a few minimal improvements for some in other domains, they also need to be aware that it will not generally help employment/welfare status or 6MWD or (in other research) objective measures of physical activity or neuropsychological test performance. NICE would be negligent not to mention such caveats, but I'm not familiar with what they do mention currently.

    I found more links and notes ...

    Online general access page for the 2007 NICE guidelines for CFS/ME (http://www.nice.org.uk/CG053). Quick reference guide (http://www.nice.org.uk/nicemedia/live/11824/36190/36190.pdf). CBT and GET are covered on p17-19 + p21 (note that "activity management" is similar to GET, p20-21). There is a patient version (http://www.nice.org.uk/nicemedia/live/11824/36199/36199.doc) and "Information for people who use NHS services" eg patients and carers (http://www.nice.org.uk/nicemedia/live/11824/36198/36198.pdf).

    The standard (abridged) guideline (http://www.nice.org.uk/nicemedia/live/11824/36193/36193.pdf). CBT and GET are covered on p26-31/32 + p49-50 (note that "activity management" is similar to GET, p31-32 + p49). A web version of the above (http://publications.nice.org.uk/chr...lgic-encephalomyelitis-or-encephalopathy-cg53).

    Then there is the full guideline (http://www.nice.org.uk/nicemedia/live/11824/36191/36191.pdf).

    CBT or GET is mentioned:

    • Under [Glossary] on p12.

    • Under [Full list of recommendations] on p47-53.

    • Under [3.2 | Summary of submissions by stakeholder organisations] on p92-93 + p95-96.

    • Under [6.3 | CBT, GET, activity management and other therapeutic interventions] on p189-248.

    • Under [6.3.8 | Deriving recommendations] p251-254.

    Activity management sounds similar to GET, and is recommended when CBT or GET isn't available, and for severely affected (!). It is explained on p12, p52-53, p193, p248-249, but mentioned in passing throughout. Setbacks/relapses are covered on p249-250.

    Evidence is discussed in more detail in the appendices (access to Appendix 1-4: http://guidance.nice.org.uk/CG53/Guidance). There are also stakeholder comments and GDG responses (http://www.nice.org.uk/guidance/index.jsp?action=folder&r=true&o=36179).
    Bob likes this.
  7. Firestormm

    Firestormm Senior Member

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    Agreed. I also think that any submission should not only relate to the 'management strategies' pertaining to PACE. I did not realise that the Guideline was used by other countries Mark. If so that does indeed make this Review quite important - more so perhaps as they only complete a Review once ever 4 years unless something fundamental (like a discovery) occurs. If you recall they did come out about PACE last year but it barely warranted a response really. I took this to mean at the time that the advice in the Guideline would remain unchanged in that regard. We'll see what comes of the main Review.

    Thank you for this. I did look at the links yesterday, however I could see no reference to any Review procedure or any information relating to this. It was probably just me not looking in the right section of something.

    I'm happy to do this and get some basic information. I might even consider registering my local support charity as stakeholders. We looked at how the Guideline had been applied locally, and found it wanting. As a result we produced a Review of our own and that might be useful in this regard as well as proving useful to the GP commissioning group to whom we presented it. I have to say though that we purposefully steered clear of the 'management strategies' for several reasons but in large part because we had no evidence from patients that related to them and we felt we couldn't comment on what amounted to medical advice. Still, we did find plenty in the Guideline that had not been embraced locally either at all or to a satisfactory extent.

    If a charity or support group is making a submission then I am of the opinion that their views have to reflect evidence gathered from their members etc. or if they are appointed representatives of a 'group' then perhaps they have the right to speak on that 'groups' behalf. Otherwise I can see no reason why individuals cannot make submissions - unless of course the Review does not allow for this?

    IACFSME Primer. Might I ask why and how this is relevant to the UK? Would it not need to be compared with NICE in some way and more fully considered? It is also from what I understand, quite early days for the Primer and it hasn't undergone any assessment as yet. Not saying it's not something that NICE should be made aware of (I haven't read it yet), I'm just wondering what your thoughts are about it.

    Margaret Williams' review. Again I haven't read it. Unfortunately, Mark, I do not have a lot of 'faith' in the things that have n the past come from this source or from Prof. Hooper. I would imagine they will make their own presentations as stakeholders as they did before. I would need to read anything before endorsing it of course as would any 'group'.

    The most intelligent critiques of PACE. Yes. Though personally I would favour a factual assessment of what lies behind the PACE headlines involving (better) use of the published data. I think any 'opinion' must come from the 'group' registered as stakeholders and not be embedded in any one particular source. So the source might be a published research study - the opinion and interpretation comes from the 'group'.

    Agreed. Though you might want to consider how NICE will now view the 'open' question of 'XMRV' etc. also.

    Mark. Would you be able (as a moderator) to create a new thread for the NICE Guideline Review 2013 and take all these comments across onto it? I think that might be more conducive to any further discussion. What do you think?

    You've raised some important considerations above and rather than debate them further here I'll hang fire if I may until we're on a separate thread. :)
  8. user9876

    user9876 Senior Member

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    I think it is important that they look at the rituximab trials. I expect them to say that the work is too early to form treatment plans and justify the treatment. However a commitment to review the results of further trials could be important without having to wait for the next review cycle.

    I've been wondering if it is worth putting together a database of various papers around biomedical results so that it is easy to identify a number of papers looking at each thing to test and the results from different authors.It would be a big effort for a single person but a number of us could take a few papers.Rather than providing a review the idea would be to make it easy to see all the different results and their relationships. This may help provide a coherent view across many papers?

    In the PACE trial papers they wrap a few facts up with a lot of story. I think an account pulling out the facts along with some of the unmentioned protocol details and where information is missing would be good. It may be we can get NICE to ask for missing data.
    alex3619 and Bob like this.
  9. Mark

    Mark Acting CEO

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    The first of the links I cited states in the third of the three paragraphs of text:

    and
    The other 3 links are just the NCGACC's generic information.
    Firestormm likes this.
  10. Mark

    Mark Acting CEO

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    It's not clear to me who they will accept as stakeholders or groups. How organisations may organise their contributions and how democratic this needs to be is a moot point. Idealistically, I would agree with you that organisations should ideally work this way. In reality, few if any of them seem to have much in the way of ensuring that their statements reflect the views of their members - the reverse is more likely the case. MEA and AfME have surveyed their members and patients in general re CBT and GET, and I guess this is why.



    It's a state of the art primer for physicians, produced by an international group (IACFSME) on what ME/CFS is and how to treat it, including a review of scientific evidence. It's been recommended by CFSAC that they should try to get it distributed to all physicians in the US. My thoughts on it are that is excellent, not yet perfect by any means, but the best such document we have and we should all get behind it. I can't think of any document more relevant to the NICE review. I believe that one of our main aims to be to try to make sure this document - and its subsequent revisions - is advertised to all physicians: it's the best tool for educating them about ME/CFS I have ever seen. It is really not hard or long to read, I recommend doing so:
    http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf


    It's a shame that you feel that way. I can imagine your concerns about the strong opinions expressed by Hooper and Williams in their work, and personally I do agree that it would be better to separate those opinion pieces from the superb factual analysis they present - I think their work would have far more power if they did that. I think that because I know that the obvious anger they express does not come across well to some audiences, although I also think they're entirely right in what they are saying and it's the reality they expose which is sometimes too much for the audience to take.

    However, I would encourage you to take a good look at this particular piece of work: I think it's quite brilliant. It starts on page 29 here, and although the 2-page preamble contains some of that strongly-worded stuff I mentioned, I think that's entirely justified by the evidence presented in the body of the report, pages 32-95 here:

    http://www.investinme.org/Documents/Journals/Journal of IiME Vol 6 Issue 1 Screen.pdf

    After reading through that 63-page history of scientific evidence telling the story of evidence about the immune system and ME dating back to 1983, comments like this one that prefaces it stop sounding like polemic and start sounding more like understatements:

    I would personally suggest sending a printed copy of pp32-95 to whoever is reviewing the NICE Guidelines along with a sentence suggesting that the NICE Guidelines ought to mention the clear evidence of immune system abnormalities somewhat prominently, and with some detail (eg impaired NK cell function) in their description of ME/CFS.
    Enid likes this.
  11. Mark

    Mark Acting CEO

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    Excellent point. They should certainly be obliged to look at the rituximab work in detail even if it can't lead to a treatment recommendation yet: there are other reasons why it is relevant.

    Another excellent point. I would think, in particular, of just pulling together a list of the 'top 10' strongest and most significant - and particularly the most recent - papers in various areas (eg immune, neurological, effect of exercise). Really, all one should have to do is provide the reference link and they should be asked to consider them. Their emphasis may be on treatment, but the Lights' study is tangentially relevant to that, and they should be asked to consider this evidence in relation to how they describe the nature of ME/CFS; as I say, realistic objectives in terms of revising the treatment advice are likely to be limited.

    It would be great if we could get them to pursue the missing data. Well worth making a big issue of that, and the gap between the evidence found by PACE and the way it was presented. It's important that the people writing the guidelines are helped to see through PACE's abstract conclusions and the layers of spin placed on top of the raw data. The data itself is damning, the spin is a masterpiece of deception. How you help someone to see through that spin is a tough question - it's a tangled web they weave...

    Perhaps just a series of true and undisputable statements presenting PACE's own results from a different perspective would be sufficient to make the point: no significant improvement in any objective outcomes (6MWT, employment, sick days, benefits) and small improvement for 1 in 7 patients on questionnaire performance - surely that story can just be told raw, almost in the authors' own words, perhaps even purely with direct quotes, in a way that would make somebody think again about how it has been spun?
  12. ukxmrv

    ukxmrv Senior Member

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    There's was a section once (on the NICE website)on what was considered a "stakeholder" to NICE. A group I belonged to registered for the first NICE guidleline attempt and was able to participate in the process. I have a feeling that it needs to be a national group but obviously that can be got around by forming a national group of some sort.

    The problem we face is not registering as stakeholders or participating - we did that last time. The problem is that the GDG makes the decisions and they ignored the patient evidence submitted last time.

    The GDG also consists of 3 patient reps who should be submitted relevant evidence. One of the patient reps (Tania from Brame) resigned in disgust. The other two patient reps stayed and may still be there. The patient reps were not elected by patients. They were chosen by NICE from people who applied (I applied but was not successful).

    The makeup of the GDG is our problem.
  13. user9876

    user9876 Senior Member

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    I worry that the first piece puts people off reading the rest or puts them in the wrong state of mind when reading the rest. I have problems with the way Hooper and Williams write, its not the content which I think is good. but I they lack political, PR and story telling skills. Hence they come across as angry activists rather than people giving a scientific view. Also their writing is simply too long.

    I think it may be necessary to write a well referenced, brief, document summerising the immunne system papers. I was taken by Jørgen Jelstad story in the same IiME issue as it tells a positive tale of discovery.

    I think the important point is that we need to think not only what material is important but also how we tell the story in a way that people will listen, understand and react in a positive way.
    currer likes this.
  14. ukxmrv

    ukxmrv Senior Member

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    Here's the stakeholder information we used last time to register some national patient groups

    http://www.nice.org.uk/guidance/index.jsp?action=folder&r=true&o=28900

    national patient and carer organisations that directly or indirectly represent the interests of people whose care is covered by the guideline ('patient and carer stakeholders')

    As NICE clinical guidelines are produced for the NHS in England and Wales, a 'national' organisation is defined as one that represents either of these countries.

    For practical reasons, local patient/carer and professional groups cannot register as stakeholders, and nor can individuals. However, they are encouraged to participate through an appropriate registered stakeholder. The registered stakeholders for each guideline are shown on the guideline summary pages.
    currer likes this.
  15. Firestormm

    Firestormm Senior Member

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    Thanks for the separate thread guys - only just found it :)

    The following was posted on the MEA FB page earlier. Check out the reply from Worcestershire PCT in relation to GP training re: CFS/ME: http://www.whatdotheyknow.com/request/gp_guidance_on_mecfs_2

    Of interest to this thread perhaps and any preparation for action:

    The links eventually provided are as follows:

    Now in my area (Cornwall) all the GPs have received to date is a copy of the Guideline, what concerns me about the above is, well several things I suppose:

    • I'd never heard of the National CFS/ME Network and I'm not very familiar with BACME either - but both will need to be researched - what are they saying? what's their message? who are they? etc.
    • I'm all for a separate training session (and continuing professional development) for our condition but I am concerned with any presentation of the PACE Trial obviously - am currently trying to review Bob's work in this regard and I really hope that it (and work by others) will allow for a more considered reflection of those results to be circulated among NICE and the GPs etc. eventually
    Obtaining a FOI from one's local PCT/GP commissioners about matters like the above would seem to be a good idea to see how matters like the NICE Guideline have been implemented (or not).

    Unless NICE (and local commissioners) up their game then 'even' the Guideline stands little chance of being implemented. Once again it is down to patient groups and individuals to try and ensure that our condition is afforded adequate funding and placement.

    Whatever the outcome of the NICE Review it will depend on these commissioners to honour their obligations. Under the new NHS structure 'we' (as patients and as representatives of others if that's the case) as supposed to be granted 'greater power'.

    One thing I want to try and ensure is that NICE maintain their 'individual' 'personalised' approach to any 'treatment' or consultation; but overriding all of that is the inherent need to ensure that every person suspected of having our condition is only diagnosed by the criteria.

    I'd also like to see the local research carried out as per NICE's original recommendations - that too will take funding - but obtaining a greater idea of local 'in the trenches' data could prove highly important. Hell after all this time - all my time - we still don't have a clue how many people are diagnosed with the condition in this country let alone how many are 'benefiting' from any intervention.
  16. alex3619

    alex3619 Senior Member

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    One of the huge things about Rituximab is not that its an accepted treatment, but that if substantiated it shows that ME is a B cell mediated disorder. So its part of the scientific description of ME: it is highly probable that most of the ME symptomology is mediated by B cell related immune factors, and any hypothesis of causation must account for this.

    Its a similar story with Ampligen. That might be approved early next year. As proven therapies go, the delay in approving Ampligen has meant it is much more highly substantiated as an effective treatment than nearly all new drugs.

    Bye, Alex
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  17. currer

    currer Senior Member

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    Is there any way an internet group could register?
    Or could one be formed that would meet the demands of the guideline?
  18. currer

    currer Senior Member

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    There are advantages to setting up an internet group as we can link with a wide range of opinion and link directly with patients - the democratising effect of the internet.

    PR is a charity - no? Can we set up a UK subsidiary for NICE purposes? Would they accept an internet based charity?
    It would be inconsistent with existing government attitudes to exclude an internet based charity as our government is constantly promoting the desirability of the internet.

    Or can we influence one of the national charities?
  19. user9876

    user9876 Senior Member

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    Not what you wanted but AFME have done some research using the FoI to see what different health authorities spend per patient with ME.

    http://www.actionforme.org.uk/Resou...HS report Ignorance injustice and neglect.pdf

    The report is quite long and I've not read it but page 24 gives a list of spending per patient with ME. Given the low levels of spending I think it would be fair to conclude many PCTs are not implementing the NICE guidelines. The latest PACE trial paper gives us some idea of costs.
    Firestormm likes this.
  20. user9876

    user9876 Senior Member

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    This is a good point. Both Ampligen and Rituximab trials show improvements at least with some patients. Hence this provides support for theories that the immune system plays an important role. It would be good to have ME described as likely to be an immune system disorder or auto immune disease (not sure what words would be correct) as this would change doctors attitudes.

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