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Symptoms and treatment management: NICE guidelines

Discussion in 'Information for NICE guidelines' started by lunarainbows, Aug 14, 2019.

  1. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I’m just now wondering if there is any way for NICE committee members to ask NICE to work with Forward ME and Oxford Brookes University once more about doing a survey on those with severe M.E & very severe M.E and their experiences with hospital stays. Including questions on specific things like physio, getting sensory things removed/kept, being made to sit upright, pain relief, and how that worsened or made their condition better and what symptoms worsened or got better. As well as how they feel compared to being at home.

    Exactly like the survey they did for GET but for severe/ very severe in relation to these specific issues. Can this be raised please I feel there’s no harm in asking. @Keela Too
    Thank you.
     
    Last edited: Aug 16, 2019
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  2. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    There will be a severe 'focus group' announced shortly. It's not exactly a focus group, since that would be impractical for severe patients, but it has a similar function.
     
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  3. Keela Too

    Keela Too Senior Member (Voting Rights)

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    There are standardised processes, and a scope document, that have to be followed. Experts can be called in to give evidence. There isn’t really a facility for NICE to “work with” other organisations, other than to commission focus groups, or to bring in an expert to deliver evidence for the committee.
     
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  4. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    But how was the Forward ME / Oxford Brookes survey commissioned? As that was sent to NICE. I’m just speaking about the same thing again just in a different patient cohort.

    I just felt the Oxford Brookes report on GET was particularly powerful due to the number of responses received, as well as the fact it was analysed independently and had stats / diagrams that really made clear what the issues were. I don’t think a severe focus group would contain the same number of responses or be analysed independently and with diagrams?. I am happy about the focus group. Just thought a survey could be a very useful addition.

    Edited to merge two posts into one.
     
    Last edited: Aug 16, 2019
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  5. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Ok, thanks.
     
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  6. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Well, it wasn't technically commissioned by or in partnership with NICE, for one. That was a bit of miscommunication, I think.

    Peter Barry suggested it to Forward-ME, in his own capacity, so that it could be submitted during the call for evidence, and then Oxford Brookes was commissioned by Forward-ME to produce it.

    The call for evidence hasn't gone out yet. When it does, everything will probably need to be officially submitted again--including surveys, reports, focus group results, etc--to ensure it's counted in the proper way.

    So there's nothing stopping a group from doing another survey like the Oxford Brookes one in the time between now and then. In fact, I'd say you should just get on with it, rather than waiting to be invited, because you probably won't be.

    Having a university or researcher do the write-up would be very helpful, too, since it ensures a degree of impartiality.
     
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  7. Trish

    Trish Moderator Staff Member

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    Can you say when the call for evidence will go out and by what date the evidence will have to be submitted? And what sort of evidence would be acceptable?
     
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  8. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I have no idea when or for how long. All I know is it's 'soon', as defined by a large organisation with a slow-running bureaucracy. Which means it could still be days, weeks or months yet.

    That said, it's better to submit something late than never. We will be returning to previous discussions to finalise the draft guideline before it goes out for consultation anyway, so if we receive something late we can still mention it.

    The only thing we do know is that the guideline is supposed to be done by October 2020, so I guess it'll be before the end of this year. Given the turnaround for focus groups, it could be a two- to six-week period to submit evidence, possibly longer but not much longer.

    Grey literature such as reports and surveys is best. Guides might be less useful, but if they're written by experts, or groups of experts, that gives them a bit more clout (though who counts as an 'expert' anyway?). Individual anecdote probably occupies the lowest rung.

    In other words, it's better to do a survey of a group rather than each member of that group sending their personal experiences in separately. Being able to say, 'x/y patients experienced z, and here are the strengths and limitations of our data,' is probably more persuasive than saying, 'I experienced this'.

    The lay members will be raising anecdotes anyway, including their own understanding of how the wider patient community feels about x, y or z.
     
    Last edited: Aug 17, 2019
  9. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Yes. This is why I thought a survey would be best. I’m going to send an email to Forward ME today about the idea I’ve had - I have emailed the countess of mar before and she has been lovely - I’m hoping she will be able to help. I will get back to everyone when she responds.
     
  10. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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  11. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Jumping back in, crashed, after a 2 day journey. Upright for so long doesn’t work.

    Very briefly, I like the idea of trying to collect systematic evidence but think qualitative research might offer more useful methodologies that might allow the “ lived experience” to be better understood.

    I don’t know if Oxford Brookes has a strong social science department but if it does, then it might be helpful to ask them to advise on the appropriate methodology for collecting this information.

    Eta: I will hopefully be resting today so as to get over this crash before my next medical appointment.
     
    Last edited: Aug 17, 2019
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  12. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Last edited: Aug 17, 2019
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  13. Binkie4

    Binkie4 Senior Member (Voting Rights)

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  14. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Today I’ve been looking into what some people are talking about in relation to M.E vs SEID (institute of medicine). As I have seen some people saying Stanford & various American research institutes do not actually study M.E and are studying a broader condition.

    It is confusing to think about it. But I would like to hope that despite that, research organisations are still catching all people with M.E.

    But today I found this which shows quite a lot of differences between ICC and the institute of medicine criteria. Although I’d say the institute of medicine criteria is still way better than oxford criteria

    After reading, I would like to see some of the ICC symptoms included in the NICE guidelines. Like the areas included in post exertional neuro-immune exhaustion. The specific Neurological impairments, which really are not explained by just “cognitive impairments”, specific things like Disorientation.

    the energy metabolic impairments relating to body temperature as well such as sweating episodes recurrent feelings of feverishness etc. Neurosensory/perceptual/ motor differences like struggling with focusing vision. Sometimes I’ll start reading and then my eyes will stop focusing completely and it’s very scary. Air hunger, inability to tolerate extremes of temperature.

    Pain as well (the specific pains they mention are what I experience - not just muscle and joint pain). Thermostatic problems. Immune issues

    I have all the symptoms on the left hand side (ICC criteria). The right hand side does not sufficiently explain my symptoms. I do think the IOM criteria is very broad. I think if some of these symptoms in ICC were covered in NICE,
    it would go some way towards including the symptoms that many with severe M.E experience as well, as it stands - the list of symptoms of M.E listed on the NHS website is nothing like what I’m experiencing on a daily basis.

    Edit pictures have uploaded properly now (edit 2: sorry the pictures are not uploaded in order, the 3rd pic is actually the 1st one to read).
     

    Attached Files:

    Last edited: Aug 19, 2019
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  15. strategist

    strategist Senior Member (Voting Rights)

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    By some people you seem to be referring to the ME Advocacy organization. My impression is that they've been trying to make the IOM definition look bad while presenting a picture of ME that is inaccurate. For example they have claimed (not in the pictures you're showing) that as per the IOM, postexertional malaise means feeling tired after exertion, when in reality the IOM specifically says that PEM is more than this. They also list things like dorsal root gangionitis or recurrent infection as feature of ME. The actual evidence for the former is 2-3 autopsy cases which is not enough to have any confidence that this is a feature of ME. The evidence on recurrent or persistent or PEM-associated reactivation of infections is consistently negative.

    They also prefer the term postexertional neuroimmune exertion even though there is no evidence that I'm aware of showing an exertion related exhaustion of the brain's immune system.

    I agree that the IOM criteria are broader and not as detailed but think that this reflects our current state of knowledge which is limited.
     
    Last edited: Aug 19, 2019
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  16. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I see. I don’t know much about it except for what I’ve seen on comments underneath some research pages like Stanford (on Facebook). As I kept seeing them I finally decided to click on it and see what they’re talking about.

    The thing I notice though is my symptoms 100% coincide with the left hand side. Infact for many of those symptoms I made myself ill by attempting to see various medical doctors to get to the root of the problem but no one was ever able to help. And I think it may be because they are explained at least in part by M.E.

    I agree as to if something doesn’t have evidence it shouldn’t be included (dorsal root / recurrent infections). However, has dorsal root been studied after that? If it was found in 2-3 cases, was it ruled out after that (ie not found in any other autopsies)? I don’t know the history.

    I do think there seem to other categories of interest in the ICC from that infogram that are not mentioned in the IOM for instance - and certainly not in the NICE guidelines or oxford criteria.

    To clarify, also, I don’t know enough to think that the whole ICC should be imported over to NICE / IOM as I don’t know how many people would experience all of symptoms (Although I imagine everyone would experience at least some of the symptoms). I think some more symptoms though could be added to get a clearer picture of symptoms we get in M.E.

    Edited to merge two posts
     
    Last edited: Aug 19, 2019
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  17. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I don’t agree that our current state of knowledge is so limited as to ignore many symptoms. For example in sensory perceptual - it’s a known symptom that there’s problems with sensory processing and we’ve discussed it a lot here. Issues with light noise movement taste touch and they also mention vibration which I’ve found to be very true as it’s a sort of movement.

    Reading / visual focus is often a problem and I’ve seen it come up before. Body temperature issues / sweating / intolerance to temperature I’ve also seen come up a lot as a symptom.
     
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  18. strategist

    strategist Senior Member (Voting Rights)

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    The purpose of diagnostic criteria is to assist in diagnosing an illness, not describe an illness in its entirety with all symptoms.
     
  19. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I’m very confused by what you say.

    I’m not sure if symptoms / diagnostic criteria are both separate sections in nice guidelines. https://www.nice.org.uk/guidance/cg53/ifp/chapter/How-CFSME-is-diagnosed

    In that case then, if they are separate sections, what I’m talking about above in all my posts is for “symptoms”.

    Although I do also think some of them especially sensory processing and temperature issues should be in the diagnostic criteria also. I’ve said before that severe M.E are not being represented when sensory issues etc are not being mentioned.

    another thing is - from everyone I’ve ever seen, or spoken to in the medical world, they only speak to me about the symptoms which are described in the actual diagnostic criteria, “fatigue”, “sore throat”, etc. diagnostic criteria is what people associate with symptoms. Also I would think If diagnostic criteria do not include most of the symptoms, and are overly broad, then surely they would be in some cases be over-diagnosing. I do not know to what extent that is the case in the UK but have read somewhere on the forum that a percentage of Uk cases are over diagnosed.
     
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  20. strategist

    strategist Senior Member (Voting Rights)

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    Consider for example the McDonald diagnostic criteria for multiple sclerosis. They focus on a few features that are considered highly specific for multiple sclerosis.

    I think there is a problem with doctor education and lack of specialists that are highly familiar with the illness (these specialists exist for other serious chronic illnesses). We have CBT/GET specialists that intentionally downplay or ignore symptoms because they've been trained to avoid reinforcing "unhelpful illness beliefs".

    There is a problem of overdiagnosis but also one of underdiagnosis. Presumably at least as we are not yet able to really come up with highly accurate and specific diagnostic criteria. It's easy to come up with very narrow criteria but do they really describe the core features? I have some doubts. Once there is a diagnostic test it will be easier to design better diagnostic criteria.
     

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