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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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    Ok. So perhaps first it may be best to actually copy and paste the nice guidelines.

    “Healthcare professionals should consider the possibility of CFS/ME if a person has:
    fatigue with all of the following features:
    new or had a specific onset (that is, it is not lifelong) persistent and/or recurrent
    unexplained by other conditions
    has resulted in a substantial reduction in activity level characterised by post-exertional malaise and/or fatigue (typically delayed for
    example by at least 24 hours, with slow recovery over several days)
    and one or more of the following symptoms:

    difficulty with sleeping, such as insomnia, hypersomnia, unrefreshing sleep, a disturbed sleep–wake cycle

    muscle and/or joint pain that is multi-site and without evidence of inflammation

    headaches

    painful lymph nodes without pathological enlargement

    sore throat

    cognitive dysfunction, such as difficulty thinking, inability to concentrate, impairment of short-term memory, and difficulties with word-finding, planning/ organising thoughts and information processing

    physical or mental exertion makes symptoms worse general malaise or 'flu-like' symptoms

    dizziness and/or nausea

    palpitations in the absence of identified cardiac pathology.”

    And later on:

    “Making a diagnosis
    1.3.1.1 A diagnosis should be made after other possible diagnoses have been excluded and the symptoms have persisted for:
    4 months in an adult
    3 months in a child or young person; the diagnosis should be made or confirmed by a paediatrician.

    1.3.1.2 When a diagnosis of CFS/ME is made, healthcare professionals should provide honest, realistic information about CFS/ME and encourage cautious optimism.

    Most people with CFS/ME will improve over time and some people will recover and be able to resume work and normal activities.

    However, others will continue to experience symptoms or relapse and some people with severe CFS/ME may remain housebound.

    The prognosis in children and young people is more optimistic.“
     
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  2. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    M.E is not like M.S because we don’t have specific lab tests that can yet identify what M.E is, so it is diagnosed in absence of those - only on symptoms themselves.
    I think more symptoms should be included in that list as I’ve mentioned sensory processing and temperature control, or at the very least after diagnostic criteria, there should be a separate section like “Symptoms of M.E/CFS” where those are included.

    Edit: for example a list of things I’d like to see included somewhere in guidelines would be:
    - intolerance to extreme temperatures (or temperatures that healthy individuals may find to not be a problem) which can lead to worsening symptoms as well as feelings of being very hot and/or very cold, feverishness and/or sweating episodes

    -sensory processing which has been discussed a lot already so won’t go into detail

    - visual perception issues including reading and visual focusing


    And actually, I think it would be good to have a separate “symptoms of ME/CFS” section so that the specific symptoms that occur in Severe and very severe M.E can be written about. Like what Greg Crowhurst talks about.
     
    Last edited: Aug 19, 2019
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  3. Trish

    Trish Moderator Staff Member

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    I think that sounds like a good idea, @lunarainbows.

    A core set of symptoms for diagnosis, including particularly rapid muscle and/or cognitive fatiguability and PEM properly described and clearly distinguished from post exertional fatigue which is so easily misinterpreted, and the fact that these core symptoms are disabling leading to at least 50% reduction in the ability to carry out normal activity even in mild ME.

    Then a longer list of other symptoms commonly experienced, like pain, nausea, OI, and sensory sensitivities which are likely to be particularly severe in patients with severe and very severe ME, and which need to be taken into account in caring for people with severe and very severe ME, which should have a separate section in the guideline.
     
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  4. strategist

    strategist Senior Member (Voting Rights)

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    Yes ME is not like ME but the MS diagnostic criteria illustrate the point that diagnostic criteria do not have list to all the symptoms patients (can) have to be useful.

    If the MS diagnostic criteria did, they would be harder to use and probably no better at diagnosing MS.

    The NICE page you're quoting are the NICE diagnostic criteria.

    Doctors do need to know about all the symptoms patients experience, especially things relevant to the care of patients (like sound and light sensitivity in severe patients). This should be a section that is separate from the diagnostic criteria however.
     
    Last edited: Aug 19, 2019
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  5. Ebb Tide

    Ebb Tide Established Member (Voting Rights)

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  6. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Thanks. The American guidelines are so much better than in the UK.
     
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  7. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    @lunarainbows a few points (sorry if you already know these)

    * NICE and IOM are totally different.

    * I agree the criteria used by NHS to diagnose ME is rubbish.

    * I agree it's important for doctors to have a list of symptoms which *can* occur in ME, especially severe ME. However, I wouldn't want these to be part of the *diagnostic* criteria, as we want the criteria to catch people with 'milder' ME too.

    * somebody referred to the 'ME Advocacy' crowd in a point above. To clarify, this does not mean ME advocates in general. It refers to a specific organisation called "ME Advocacy", whose members tend to hold specific views.
     
  8. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Thank you! Yes I did know IOM and NICE were different - and I knew IOM criteria is a lot better than NICE at the moment!

    I agree with you on points 3 and 4. I wouldn’t want to miss mild M.E either and infact I think the earlier it’s diagnosed the better, as it’s easier to get some chance of recovery. I personally think I had M.E in a milder form for a while, maybe even a year or two, before I was even diagnosed with M.E by which time it had turned severe. I wish I had known.

    I mentioned sensory issues & temperature fluctuations because those are actually two of the first issues I had (even when I was mild), long before I even realised something was wrong from the fatiguability side of things. And it’s only got steadily worse. From speaking to people quite a lot of people speak about temperature issues & sensory issues, as well as other symptoms, from mild all the way to severe, and it’s quite unique to M.E I would think. But I don’t actually know how common that is or whether it’s core to M.E. or a subset of people.

    I also agree that as well as diagnostic criteria, we then need a separate symptoms list. this should include many of the symptoms severe / very severe experience as well as how people in care and medical settings can help us. I think this is so important.

    It seems like there’s some politics involved in M.E. I think I would rather stay away from it as much as I can as I’ve got enough stress as it is! :p I am very happy with the research OMF and other American organisations are doing in any case.
     
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  9. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    @lunarainbows yes I agree. Although these symptoms shouldn't be required for diagnosis, as many who are mild don't have them, they should be things to be aware of. When I was mild, light sensitivity and temperature issues were things that I had too, that I wish I had known were signs of ME.

    It seems to me, though I may be mistaken, that it's unusual for light sensitivity to be experienced by people with mild (or even moderate?) ME. I wonder whether the reason that you and I both got it with mild ME, is that we are both autistic, meaning that we were already predisposed to some degree of sensory sensitivity (which ME has of course amplified a hundredfold). I already thought this might be why for me, so it's interesting to learn that you experienced the same thing.
     
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  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think there is a lot of confusion about diagnostic criteria. As far as I am aware NICE does not give diagnostic criteria. It gives guidelines indicating the situation in which the diagnosis should be considered.

    In general diagnostic criteria are not useful for actually looking after people. They are useful for classification of cohorts of people for research and epidemiology. In the clinic it is not a question so much as to 'what is the diagnosis here' as to what is a useful way to classify this particular persons problem, with varying degrees of probability in such a way as to best advise what to do and what not to do. Put another way, a doctor who needs diagnostic criteria does not know enough to be looking after the patient. For those who know enough NICE guidelines are not needed. For those who do not the important thing is to make them aware that they should be considering the diagnosis, and probably not making it but asking for expert advice.

    My impression is that the NICE guidance on when to consider the diagnosis is quite reasonable.
     
  11. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Yes that could be the case. I hadn’t thought of it that way. I also had increased noise sensitivity as well (more than usual I think), I think that may have actually one of the first symptoms - and these came on long before I started to get the fatiguability.
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Another point is that NICE criteria are not intended as a textbook of medicine. They are intended to guide doctors with limited knowledge into sensible pathways and to provide agreed norms to restrict speculative management. The text needed for such guidance is not necessarily going to look anything like what would appear to be a full description of an illness. It has to be very concise and efficient because most of the doctors involved cannot be expected to wade through more than the key pointers.
     
  13. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Hi, this is Lunarainbow’s mum. Unfortunately she is still too ill to come on the forums and is unable to type. She is very anxious about missing anything related to the NICE Guidelines. As you have a meeting soon, she has asked me to write the following for her. She dictated this into an app and I have edited it for her.



    Although there is no drug for the underlying disease process, doctors can still help us quite a lot by giving us symptomatic treatment. For example pain relief. I haven't had any pain relief from any NHS Doctor or GP and in fact when I went to a fibromyalgia clinic they told me that I didn't need any pain relief. It is only recently that I've seen a private doctor who came to my home and is now writing to my GP to urge them to give me pain relief for my severe pain. I think a lot of doctors are not actually aware of how bad pain can get in ME and in fact it can be unbearable and very hard to describe them. I think everyone with ME reacts differently to pain relief for example I cannot take opioids due to how unwell they make me feel and I cannot take non-steroidal anti-inflammatory drugs so one of the few options left to me is to have Lidocaine injections or infusions.

    Another thing is that at the moment people with any kind of blood pressure or heart rate issues which are very common in ME either end up with it not being treated, or are lucky enough to find a good PoTS doctor or they have to see someone privately who will prescribe fludrocortisone or midodrine or ivabradine or another pots medication. in my experience I have pots symptoms in general my heart rate and my blood pressure goes up with exertion. But in order to get any kind of treatment or symptomatic relief I had to go into a hospital and do tests like an echocardiogram and an ECG in order to even try any medication.

    But with something like M.E where these blood pressure and heart rate problems are common, at least some of these drugs could be trialed for a short period and if they help then the patient could take them for the longer term. This would be especially helpful for people who have severe ME because it's extremely difficult to travel into hospital and in fact having to travel into hospital caused me to deteriorate quite significantly.

    There is also the point that there are portable ECGs and blood pressure monitors that perhaps could be used in ME clinics or even in GP Surgeries if they wanted to investigate further. There are also drugs like low-dose beta-blockers.

    I know that quite a lot of people including those with severe ME do find a lot of benefit from some Mast cell medications. I understand that there's not a lot of evidence about these drugs but I think with an illness like M.E, we are probably not going to get drug trials for a very long time but there are some drugs that could help alleviate severe symptoms and improve quality of life in the meantime. And in particular because these drugs are already known about and have been used safely in many patient populations.


    I have also heard that some with severe ME get muscle spasms find a lot of help from baclofen is well.

    I think it would be really helpful if these drugs are at least mentioned in the nice guidelines as medications that can help with symptomatic treatment. The problem at the moment is because these are not in the guidelines, you might get lucky and have a sympathetic GP who is willing to try medications like this to help with symptoms, but equally you might get a GP who has no interest in trying anything because they think nothing can be done to help. And that's not true.

    We cannot travel as severe ME patients but they can at least help us. At least as part of a compassionate service, I think doctors can try their best to help alleviate pain and other symptoms, and it will also help them to understand there are things, even if they're small, that can help us and maybe even lead to improvement in our quality of life.

    @saranbonser @Keela Too @adambeyoncelowe
     
    Last edited: Sep 4, 2019
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  14. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Thank you.
     
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  15. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Hello to @lunarainbows Mum! (and also @lunarainbows) :emoji_wave:

    I thought those suggestions for NICE were excellent!

    I don't read or follow most of the threads about the NICE recommendations (I'm not in the UK) but I wanted to respond. I appreciate all the time and effort that must have gone into making that post.
     
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  16. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Hi, I’m Lunarainbow’s mum writing again on behalf of her. Today we found out that Greg Crowhurst is not submitting his testimony to NICE. Lunarainbow is very upset about it. She wants to know why - could he have been treated badly by anyone during the process and that’s why he is not giving testimony? She says he was a wonderful advocate for people with severe ME. She had recently bought his book on caring for M.E.

    https://carersfight.blogspot.com/2019/08/regarding-new-nice-guideline-on-mecfs.html?m=1
     
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  17. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I don't think it's that (though I know as much as everyone else).

    When he said 'I did not feel able', that read to me like he had his hands full.

    It's probably not helpful for us to speculate without hearing it from the horse's mouth. Maybe he will speak out about that in due time, if he wants to.

    But I am sorry we never heard his testimony. I'm sure it would have been essential.
     
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  18. Trish

    Trish Moderator Staff Member

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    Has he been able to submit written testimony? And if he can't submit testimony, is there any provision for someone else caring for a severely ill person with ME to be invited instead?
     
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  19. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I can't discuss what's been read or said in committee meetings, except in broad generalities, so I can't really answer that question directly.

    But I think I can say we've not yet discussed subgroups like children or the severely affected, as you'll see from the minutes that have been published so far. I would also take Greg's statement at face value.

    I'm not sure if another person will replace Greg now. NICE might think that because we've got a severe 'focus group'/research project coming up, they might not need another expert witness.

    If someone wanted to volunteer themselves to NICE, though, then they might want to do that sooner rather than later. There's no guarantee it would happen, but I imagine there's only a small window of opportunity if NICE wants to keep on-track with the development process and not delay publication.
     
  20. Forbin

    Forbin Senior Member (Voting Rights)

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    I've had something like this. Whether or not it is the same thing, I don't know.

    Essentially, if I was sitting across a lunch table from someone and was engaged in conversation with them, it would become very uncomfortable for me and I would have to avert my eyes from their face fairly quickly. In my case (and maybe in no one else's) the problem was probably related to my balance problem and how it affected my eyes. My eyes and balance may have been separate issues, but I doubt it.

    Anyway, I believe my inner ear problem created a difficulty in aiming both eyes at the same target, such as at a face across a table. This inability to converge the eyes correctly seems to be a form of "strabismus," an eye condition I was first diagnosed with years after onset.* For me, this difficulty was most noticeable for objects I was attempting to focus on just a few feet away.

    You might think that this would cause double vision, but, in my experience, vision from one or the other eye was seemingly ignored or suppressed by the brain. Never-the-less, you can feel yourself fighting to get both eyes to work together. If, like me, you had no idea what's going on, you just feel VERY uncomfortable. Possibly, it's a subconscious sense that your eyes look strange to others because they aren't converging, so maybe you just subconsciously look away to try to hide the fact. Or maybe the strain of trying to force the eyes to work together just becomes exhausting.

    I believe my difficulty with converging my eyes was either initiated by ME, or possibly was unmasked by ME. My brain may have figured out how to compensate for childhood strabismus only to have ME somehow tear down my ability to compensate.

    As I say, this is just my experience (and speculation) and it may not relate to anyone else. Over the years, as my dizziness has lessened so has my difficulty with maintaining eye contact with people who are positioned nearby.


    *[ETA: In my case, I was diagnosed with "latent" strabismus, which is diagnosed by covering one eye and seeing if it no longer converges with the uncovered eye. When both eyes are uncovered, they appear to converge, but they still may be struggling.]
     
    Last edited: Sep 12, 2019
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