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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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    Hi, I thought I would start a thread about symptoms and treatment management, as I heard that will be being discussed by the NICE guidelines in September. So we can all put our ideas below for people to use for their research!

    I haven’t had a full chance to look through and think about all symptoms and treatment yet so I’ll post again later again, but for now.

    in my lived experiences as well as what I’ve seen in countless other patient experiences:

    Symptoms

    -severe sensory hyper-sensitivity. Over-stimulation can bring on an increase in other M.E symptoms, pain, as well as an increase in the sensory sensitivity itself, and make patients very unwell. Light, noise, touch, taste, smell. Perhaps specifically light and noise sensitivity being most severe and perhaps most painful and distressing to us - because even if people don’t touch us, light and noise are impossible to ignore especially hospital environments which can make us more ill and it is creating a serious accessibility issue. (See other thread in this forum).

    I think it would be even more helpful to have in the symptom guidelines that this sensitivity can often worsen with the severity of the illness, and can occur in all categories of M.E, from mild M.E to severe, with those with severe and very severe M.E sometimes being unable to tolerate any sensory information at all.


    Treatment management

    In the case of sensitivity:


    An emphasis on preventing distress and harm.
    An emphasis on reducing sensory input if the individual needs that
    To listen to individuals lived experiences
    Keeping us comfortable by whatever means are possible.


    - dark glasses may be needed to reduce light input
    - eye masks
    - earphones / headphones with noise cancelling technologies or other types of headphones can be recommended
    - listening to patients lived experiences: if a patient says they cannot tolerate something, the cannot tolerate something. Ignoring their wishes can and will cause significant harm.
    -low stimulation environments
    - an occupational therapist specialising in sensory processing can be recommended

    The 25% Severe M.E charity has some great factsheets on listening to the patient if anyone wants info.

    An emphasis that ignoring sensitivities can and does cause high levels of pain, distress as well as serious worsening of symptoms and harm and that all professionals dealing with said patient need to be aware of this.

    We do not have empirical evidence on sensory sensitivity as there is currently no way to test for that. Are people with autism tested for that? No. Yet I was just asked in my assessment about it, I told her my lived experiences, that was it. We have no info on sensory sensitivities in M.E precisely because there is a lack of anyone listening to our lived experiences.

    In the meantime though, we do have countless lived experiences and we live in our bodies and know what helps us and know that the only possible way of us being able to cope or to even gain some health is to reduce sensory input to whatever level we need it, at that particular time.

    By doing so, we may then feel able to cope with the next second and the next minute, and the next day and the next week and the next year, more than we would have before.

    I will have a think on other symptoms & treatment later esp in relation to severe M.E.

    Edit: please see https://www.nice.org.uk/guidance/cg53/chapter/1-Guidance#presentation for current NICE guidelines.
     
    Last edited: Aug 15, 2019
  2. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Symptoms:
    Significant visual disturbances, can cause difficulty reading and processing information

    Treatment management:

    Understanding that reading for lengths of time can be particularly difficult for those with severe M.E, so having other forms of input can be useful if the patient requires it (ie audio at low volumes for short periods of time).
     
  3. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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  4. Sarah94

    Sarah94 Senior Member (Voting Rights)

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  5. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Thanks. I'm watching.
     
  6. Hutan

    Hutan Moderator Staff Member

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    It's a good idea for a thread @lunarainbows. I doubt that there is any study on whether (graded) exposure to light solves photophobia in ME/CFS. I wonder if light exposure is a treatment for any other condition involving photophobia.

    Long term photophobia is a common symptom of traumatic brain injury. I haven't found any suggestion that exposure to light solves the problem; in fact management seems to involve reducing exposure.

    I suppose there might be some risks if exposure of eyes to light is severely restricted over a long period of time. Maybe there is some evidence quantifying that risk in healthy people?
     
  7. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Anecdotally I find that:

    Reduced exposure to light makes me better able to tolerate light when I am exposed to it.

    I don't think there should be a study done on graded exposure to light, this would be unethical as we have anecdotal evidence that this can be harmful.
     
  8. Hutan

    Hutan Moderator Staff Member

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    This article is interesting.

    Shedding Light on Photophobia

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3485070/

    It's not great on CFS, but there's discussion on possible physical causes. Maybe trying to determine the cause of photophobia in ME/CFS would help the understanding of ME/CFS (or a subset).

    The article quotes some literature to support exposure therapy - although as we know, that may not mean that there's good evidence.
     
  9. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    @Hutan

    So I’m sure we are all aware but with depression, so much of what we go through is the exact opposite of depression. In depression, exercise helps significantly and in M.E/CFS it worsens significantly. I am very very certain that this is another similar case for photophobia.


    For example in Autism- Management involves reducing exposure as much as possible, to the point even hospital rooms have designated low-lighting rooms and cinemas have low-lighting cinema showings. Glasses, including those that block out certain frequencies and fluorescent light.

    I think the point to stress is, patients are able to make the decision as to which amount of light input they can tolerate. In my experience; if at any time I can tolerate a bit more light, I absolutely try to do so. It’s the same as activity - we only restrict when we absolutely cannot do any more. I love sunlight yet it breaks my heart I cannot tolerate it anymore. I grieve for it every day. if someone is restricting light, it’s because the harm that light causes is so significant that there is no other choice.

    I agree with @Sarah94.
    When I am exposed to light every day, I become less and less able to tolerate it, even in small amounts. Also if I am exposed to too much sensory info, I become unable to do other daily activities. However if I am not exposed to light at all for quite a while, then the next time I am exposed to it: it is not as difficult. My nervous system is not as stimulated.
     
  10. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    This may be an interesting read for people:
    This person had to change her whole lifestyle just to compensate for sensory processing.

    http://www.thinkingautismguide.com/2018/09/what-is-light-sensitivity-like-for-one.html?m=1

    “In settings where I'm unable to control the lighting, I'm basically on a timer. At some point, I'm no longer going to be able to think clearly, or have the energy left to complete tasks and function. Almost every action I might take in the course of a normal day involves mentally calculating what the lighting will be like, and how long I will be able to tolerate it. Trips to the store, social events, driving during the day and so on: any activity requires forethought regarding lights and the inevitable energy/mood crash. Again, the pain is uncomfortable, but it's the impact on my energy level that creates the biggest hurdle to daily functioning.”

    “the more my eyes experience a lasting ache, the more my energy level and mood plummets.”

    As for possible reasons as to why this occurs in M.E. we simply don’t know. I wish someone would do research into sensory processing. But I don’t think it matters right now, I think what matters is listening to our lived experiences as they are now, and acting to prevent distress and harm.

    I also think, that there is a significant wealth of knowledge and help from sensory-qualified occupational therapists who work with those with sensory processing disorders and sensory teams that is not being used. Including light, noise. Temple Grandin came up with a way of reducing noise distress but this also absolutely respects individual limits.
     
  11. Hutan

    Hutan Moderator Staff Member

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    Just to be clear luna, I'm not doubting this.

    The problem is that, as with exercise, doctors who think people with ME/CFS need to get over themselves or have some exposure to light won't necessarily listen to those lived experiences. So we need to think of some additional strategies. Poking holes in research purporting to show that light exposure cures photophobia might be one strategy.

    Finding a physical cause for it would obviously help. Maybe, given a bit seems to be known about causes of photophobia, it wouldn't be that hard to sort out. Maybe no one has really looked before?
     
  12. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I agree with you on this. we need to try to find as many holes in those kinds of ideas. I haven’t come across that kind of evidence though? not from my limited research on sensory processing issues that I did. I will look into it more. And please do post if you find any evidence that we can pick holes in. my worry is that even if we don’t find enough evidence, if people don’t listen to us, more harm and distress is going to be caused.

    It’s also a problem that no one really knows what causes M.E in the first place. So it’s even harder to try to find out what is causing the photophobia. photophobia is also often accompanied by other strange visual issues for example Whitney Defoe cannot look people in the eyes of face who enter his room. I too now have this problem. I simply cannot look into people’s eyes for any length of time; the over stimulation makes me so ill. I have no idea why.

    As far as I am aware, after lots of campaigning and years and years of having voices unheard, it was finally accepted that the sensory processing (in ASD for example) can not be “cured” by forcing people to push through, although of course some practitioners do still like to try such things. They still don’t know what causes sensitivity in these conditions, after years of research.

    It’s the same for quite a few other sensory processing related conditions as well I think? I think my friends mum who has dementia was referred to sensory integration and it helped reduce distress. I don’t know how these conditions managed to get recognition or the hurdles they had to go through.


    Edited to add: I am aware that there is research on sensory sensitivities on ASD. What I meant by my post, in relation to M.E, and sorry if it came across otherwise, is that there is no “unifying” theory for all of these significant differences, or a cure, and so the emphasis is on sensory integration and on helping to live with symptoms in ASD. It may be just as difficult if not more so to find a unifying cause in M.E.
     
    Last edited: Aug 14, 2019
  13. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    In symptoms, rather than just fatigue, I would like to see:

    Fatiguability (someone else wrote this in another thread on this forum. I really cannot remember who it was but I credit it to you - whoever it was!!)

    Intolerance to exertion (I understand some American advocates don’t like this term but I think it’s useful? Rather than fatigue).

    I would like to see research done by workwell foundation or Harvard being taken into account although I have not actually had a chance to read it properly but have heard good things.
     
  14. Simbindi

    Simbindi Senior Member (Voting Rights)

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    A good primer for understanding sensory issues in autism is:

    Sensory Perceptual Issues in Autism and Asperger Syndrome, Second Edition: Different Sensory Experiences - Different Perceptual Worlds
    By Olga Bogdashina, Foreword by Manuel F. Casanova

    https://www.jkp.com/uk/sensory-perc...m-and-asperger-syndrome-second-edition-1.html

    (also available from other booksellers)
     
  15. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Thank you. I don’t have this one yet. Have you read it? Does it say how the stigma on sensory processing was overcome?

    I have read the books on sensory processing that was recommended to me at my ASD assessment, including “out of sync child” and a few others. I read a few on autism at the time as well, But it was more on symptoms and how to help cope with sensory processing difficulties as well as raising awareness of it.
     
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  16. Simbindi

    Simbindi Senior Member (Voting Rights)

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    It's research based - starting from the experiences of the autistic individuals themselves. If you click on the 'Look inside' link (top left) in the link I gave you will be able to read the first 30 pages or so.
     
    Last edited: Aug 14, 2019
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  17. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Ok thanks. I can’t find the link on my phone. I do have quite a good working knowledge of sensory issues in ASD, (well from what I read a few years ago, I’m sure the field has moved on from then) but was raising the point that despite all these significant sensory issues, there doesn’t seem to be a specific “unifying” theory as to why all these sensory processing issues occur, or a cure, and it’s more based on helping to live with symptoms and sensory integration. I think that in the case of M.E it may be similar, if not more so, difficult to find a unifying theory as to why sensory differences occur.

    + in the meantime we should be reducing harm and distress.
     
  18. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Re treatment management:

    There is a lot said on subject of pacing in this NICE guidelines forum. Would anyone be able to summarise what was said on the thread on pacing here and any conclusions?

    Guidelines currently say some patients like pacing but there’s no evidence for it. How can that be changed?

    What does pacing mean? (If GET is removed and pacing replaces it - what is pacing? Will it be about baselines + increasing? )

    Fluctuating severity of symptoms from day to day should be recognised I think.

    Edited to add a sentence.
     
    Last edited: Aug 14, 2019
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  19. JemPD

    JemPD Senior Member (Voting Rights)

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    This is my experience too. The suggestion that expose will help/cure sensory processing difficulties is so aggravating to me as wheni'm well rested I can tolerate strong sunlight with a visor & also even a little music, but as the battery drains I become more & more sensitive to it & it is experienced as brighter & brighter & louder & louder, to the point that as I crash it becomes utterly excruciating. And the light & sound may well be the only thing draining the battery - eg having a lovely lie down on the recliner outside. But trying to explain that to doctors is like screaming into the wind. They simply cannot hear it...

    I do wish they would pay more attention to researching sensory issues I feel sure it would be revealing, but instead they persist on studying symptoms like fatigue which are common to so many illnesses.

    But first they would have to understand what it actually is that we're experiencing, they would have to listen, closely, to what the experience actually is, because in my experience they think it's like someone with anxiety who 'can't cope' with the extra sensory stimulus.

    And while i'm not critisiing or miniminzing the issue for people with anxiety disorders, this is totally different. In fact in the example above, if i'm anxious I can tolerate much, much more sensory stimulus & for much much longer before crashing than when i'm calm & relaxed... I assume due to the adrenaline effect.
     
  20. alktipping

    alktipping Senior Member (Voting Rights)

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    light sensitivity is something I have always had even before m e . calling it a phobia is silly to say the least it is called photo sensitivity or was when I was finally told by an optician when I was seventeen certainly explained donkeys years of headaches. I should mention it has definitely gotten worse since I got m e .
     

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