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Light noise stimulation sensitivities in M.E and whether these are being considered as extremely important in the guidelines

Discussion in 'Information for NICE guidelines' started by lunarainbows, Aug 5, 2019.

  1. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Something I was thinking about, as someone with Aspergers diagnosis from before I got M.E. And was wondering if there is any way to bring this up in the meetings. Re the sensitivity to noise and light and stimulation, I think arguably this is one of the most distressing and terrible things about severe M.E and is one that is hardly mentioned anywhere, or even mentioned in the guidelines in the context of how to help people and what not to do, and because of that, so much harm is caused.

    For example, I have a diagnosis of Aspergers with sensory processing difficulties. Because of this, I’ve had issues with light and noise when I was younger, long before I got M.E (however I wasn’t diagnosed when young, despite having life long difficulties with social situations etc). the light noise stimulation sensitivities (including difficulties in crowds, looking at movement), are very well known in autism-

    to the point we are often advised to get noise cancelling earphones, eye masks; avoid situations etc, we have autism passports so that when we go into hospitals doctors are aware of our sensitivities, can request individual hospital rooms, it’s written everywhere on my occupational therapist report and so on, and rightly so.

    But quite honestly the level of sensitivity I had with autism, is 1/100th the level I am experiencing now with severe M.E. yet it’s as if it doesn’t exist, because no one in a position of authority seems to be aware of it. it is the sensitivity that stops us from going into hospital and travelling, as we cannot tolerate the stimulation and we become so dizzy and unwell and distressed - because no one in the hospital seems to be aware of our situation and so will not do anything to reduce stimulation. It is not the fatigue alone - because if it was, we would be able to just go into hospital in wheelchairs and lying down, with no problem.

    It is the light/noise and stimulation sensitivity that makes basically every single situation extremely distressing and makes us unwell. It’s what stops us from accessing care, as care workers aren’t trained or understanding about the level of sensitivity (yet they do know about autism). It’s what stops us from having visitors. it isn’t really talked about in the context of light/noise/stimulation sensitivity and M.E, and I think this is a huge problem. as we saw with Gigi, having had her eye masks and ear defenders taken away.

    Is this being talked about in the committee? as someone with two conditions that can cause light/noise sensitivity, but with huge differences in how the sensitivities are treated in both conditions. I find it very hard to understand how and why our severe sensitivities in M.E, which make us unbearably ill, and put us in dire situations are not taken much more seriously and guidelines do not include how others in positions of authority can and should support us.
     
    Last edited: Aug 5, 2019
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  2. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I hope you do not mind me tagging because the more I think about this, the more upsetting I find it.

    Whenever I talk about my sensitivities, and how dire they are, people say “oh she’s autistic”. And I constantly have to correct them. No, it’s not. It’s really not. It’s the severe M.E. No one, from GPs, hospital workers, care workers , to occupational therapists, physios, were willing to believe me or listen, and it’s got to a point where I’ve just given up trying to explain.

    At least in my situation, I seem to have the “excuse” of autism and once I mention that, people seem to relax and agree that i need the curtains drawn; that I need the sounds off, even though that’s not the reason why. What must it be like for people who don’t have an autism diagnosis?

    I just really, really think if it’s addressed in strongly worded terms in the NICE guidelines, the severity of the sensitivities due to neurological processing, as well as how people can help us, it wouldn’t have to be this way.. it could be be start of people understanding.

    @Keela Too @Jonathan Edwards @adambeyoncelowe
     
  3. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Thanks. As someone who gets sensory processing symptoms myself, I understand your point completely.

    We can't discuss what's said in the meetings, but we can discuss the broad subjects scheduled in as these are in the public domain anyway.

    We will be discussing treatments and symptom management in September. We can raise anecdotes if we want to, and I'll be watching threads like this as part of my 'research'.
     
    Last edited: Aug 6, 2019
  4. Unable

    Unable Senior Member (Voting Rights)

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    I wonder.

    Sensory issues are a problem in ME. Dorsal root ganglion issues have been noted in ME patient autopsies. As patients we struggle to process incoming information, and if overwhelmed we fry (for want of a better word).

    Exertion of any kind will always involve sensory feedback eg balance, proprioception, coordination, and so maybe part of our issue with exertion is to do with the increased sensory processing?

    Would this also explain how physical exercise, and mental exercise can each produce a similar sort of crash? Both involve sensory input, and processing of those sensations.

    However I worry that suggesting this as a possibility might perhaps play into the narrative of the “central sensitisation” premise. That premise, put forward by those who think we just pay too much attention to our symptoms!! So I am a little nervous of this as a suggestion.

    Yet I wonder if many of our issues could arise from inflammation of sensory pathways? (I can reduce PEM by taking anti-inflammatories during and after busier times in my life, so that is another reason I wonder about this. )

    Why, all this might happen is another question, but I think you are right Luna, sensory issues are central. The worse we are, the worse those issues get; both in the moment and over a longer timescale. In fact for me, a reduced tolerance to light & sound can be one of my key indicators that I’ve over-stretched myself and need to pull back.

    Food for thought.
     
  5. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Yes I agree and it also needs to be pointed out that it is perverse to re-label sensory hypersensitivities as "pervasive withdrawal syndrome". Esther Crawley and her ilk seem to claim that ME cannot cause these sensitivities, therefore these children have Pervasive withdrawal syndrome and not ME. The guidelines need to be changed so that she cannot make that claim.
     
    Last edited: Aug 9, 2019
  6. rvallee

    rvallee Senior Member (Voting Rights)

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    Agreed that it should be talked more. It's very disabling and yet barely gets any attention. It's far worse than fatigue (distinct from PEM) for me. And it certainly points to signal processing areas in the brain. It's even something anyone who's ever had a hangover or a severe headache is able to relate to.

    It's not that complicated, it's just dismissed out of hand because it can't be tested for but that's the absolute worst way of doing things.
     
  7. JemPD

    JemPD Senior Member (Voting Rights)

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    Too ill to say more but am heartily, heartily agreeing with everything that has been said in the previous posts!
     
  8. mango

    mango Senior Member (Voting Rights)

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    Same!
     
  9. Amw66

    Amw66 Senior Member (Voting Rights)

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    This
    as my daughter is no longer moderate but moderate/ severe sensory sensitivity has become more pronounced.
    Is this related to severity / length of time with illness, or indicative of some internal " switches" being toggles.

    Fatigue was never the most onorous / prevalent symptom , and I suspect that this is the same for most.
    That simple fact needs to be made more clear.
     
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  10. Samuel

    Samuel Senior Member (Voting Rights)

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    i want to press the like button hard.


    although i have piosted this befoer here is a list of 23 intolerances: https://www.s4me.info/threads/does-...t-exertion-is-the-correct-focus-concept.6059/ .

    here is a post about hospitals and demanding correct care: https://www.s4me.info/threads/hospi...ing-for-treatment-guidelines.1639/#post-27805 . i wanted to say what i said in that post more than any other post on the forum ever.


    i wodner if we could take your last question and change "What" to "Why" and insert "this" between "like" and "for"? practically spam it to the ends of the earth.

    "why must it be like this". create posters. do image memes. why must human beings die becauwe of their label?

    this is a reasonable question. this is a question that does not get asked.

    think of whitney, except without the support he has. there is not small number.


    this is killing human beings in our population. it's not a trivial thing. human beings in our population cannot go to ohstpicals for lifee-threatening conditions. often in part becaue of this.


    for rational reasons. as one exmplae got non-histamine-mediated angioedema? if it gets close to getting bad you have to go to the hospial. ambulance can usuallynot arrive in time. in many places they cannot do intubation so they have to take you to the hospital.

    but you do NOT go to the hospital for this condition if you have m.e.

    because you do not get CORRECT MEDICAL CARE. til autistics have that. in which countries?

    you stay where you are, bedridden, becuse you rationally calculate that you *might* squeak by without dying if you do not go but you *will* be harmed by going. and when youa re harmed enough, which is high probability, you stop beinga ble to go to the bathroom without bedpans, and nobody will take care of you, so you die. in many places thre is no support for bedrdieen at all. and ome who support you WILL kick you out on the street if you require bedpans. you WILL die under those circumstances. not going tot he hostpical is rational.

    even if nursing homes were a viable option for m.e. for all raesons except your point, they would fail because of your point.

    i know this because i experience it. my doctor said the medicine to try for angioedema at home for emergencies is too expensive to even try one dose of. and it is not guaranteed to work as my angioedema is soap-trigtgered with a delay.

    so if i stop posting here, you know one possible reason.


    > we have autism passports so that when we go into hospitals doctors are aware of our sensitivities, can request individual hospital rooms

    please tell us more if you can. in which countries? what do they look like? why are passports necessary? if you were able could you say "i need x y z"? could your diagnosis provide that?

    if it is like medicalert bracelet (i.e. shared by common and accepted diseases) this could be useful and less dangerous wrt political instability. (identifying symbols are used to classify populations in such times sometimes.)
     
    Last edited: Aug 5, 2019
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  11. Amw66

    Amw66 Senior Member (Voting Rights)

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    This.
    Until the general public comprehend this we are speaking in a bubble.

    It is a basic human rights issue.
     
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  12. Wonko

    Wonko Senior Member (Voting Rights)

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    @Samuel

    Autism passport 'info';

    https://network.autism.org.uk/knowledge/policy-guidance/autism-passport

    The 'autism passport';
    https://network.autism.org.uk/sites/default/files/ckfinder/files/Autism%20passport.pdf

    This doesn't seem to be an official document, it seems rather to be yet another piece of paper to show totally uninterested people, and it also appears to be a double side printed piece of A4 paper, which will end up in a right state in short order if carried around.

    Unless of course the bearer laminates it and carries it around in a folder of some sort, and who has the spare arms for that.
     
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  13. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    I think this speaks to the possible utility of thinking of ME/CFS as a disease of 'intolerance' rather than fatigue, as @Samuel and others have discussed here before.


    Off the topic of light and sound:

    I am 'mild' at this time. On a bad day, fatigue may well be my biggest issue. On relatively decent days, on par with fatigue, the biggest nuisance for me is 'chemical sensitivity': numerous food sensitivities, pharmaceutical/toiletry products, as well as to some other materials.

    So I am on board with the idea that exercise/exertion intolerance, while certainly the biggest problem for most people, is only one of the many 'intolerances' that seem to all tie together.

    My thought is that it is possible that Ron Davis' nano-needle sodium chloride stress test results are showing something that represents general 'intolerance'.
     
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  14. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I am coming out of a period of being severe, and, living alone, life was a nightmare. I did not then have adequate support, just eating was a real struggle. However my biggest dread was being forced into hospital or nursing home care, even if just for respite, because of the hypersensitivity issued. My family and friends could not understand that eating cold beans straight from the tin, not showering for weeks at a time, often going for a week or more without seeing anyone, was preferable to not being able to control my sensory environment.
     
  15. Forbin

    Forbin Senior Member (Voting Rights)

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    These kind of sensory sensitivities, difficulty with bright light, loud noises and, I would add, balance, are symptoms I've previously had when sick with a severe flu. I pretty much assume they are caused by elevated cytokines.

    They are also symptoms of hangover, in which I believe alcohol dulls the senses, so the senses try to compensate by becoming more acute. When the alcohol is removed, the senses remain in this hypersensitive state for a while.
     
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  16. WillowJ

    WillowJ Senior Member (Voting Rights)

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    I am really glad you posted @lunarainbows

    I have brought it up various places, as it's a major symptom for me and not only is it very troublesome, it's also one of the most limiting symptoms because it stops me from doing things I might otherwise be able to do even if I have the cognitive capacity or (when I was less ill) could have physically gone somewhere.

    Also the foods thing is unhealthy. I am lucky in that no one in authority is trying to make me eat things I can't eat, but I am bothered to not see research trying to figure out our GI issues.

    (Any why is it not mentioned in the literature that being underweight is a thing?? As I know that all weights are possible but underweight or tends to drop underweight is definitely a subgroup.)
     
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  17. Amw66

    Amw66 Senior Member (Voting Rights)

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    I do wonder if the underweight group is related to aminos acid use for fuel. This could drive catabolic state.
     
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  18. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    @Wonko @Samuel

    Wonko, the autism passport helped me considerably and I’m not sure why you are dismissing it. It may not be an official document and it’s not perfect but it is certainly something. I was advised to use it by my autism counsellor as well as when I was diagnosed with Aspergers.

    I took two photocopies so even if one got lost, I had another.

    All the medical officials I gave it to, were aware of it. It’s in my GP records as well.

    As soon as I gave it to paramedics they started telling off anyone in my block of flats who were making noise as we went down in the lift. They turned off lights in the ambulance and stopped making any noise. When I got into hospital, I was taken into a separate room to wait (so I didn’t have to wait in a waiting room) and was then allocated my own room where my mum could stay - as I cannot cope by myself (this is regardless of M.E or not).

    And we need something like this for M.E.
    Edit: and an official one that was endorsed by the NHS/NICE would be even better, so that it is not dismissed by medical professionals. It took autism campaigners many decades to get to this stage - we don’t have that sort of time.
     
    Last edited: Aug 6, 2019
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  19. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I believe some criteria do mention weight changes as typical of ME, but I think the balancing argument is that you don't want to miss some hidden illness causing weight loss or weight gain.

    The problem with saying something is due to ME is that symptoms aren't taken seriously or aren't investigated when this happens. When a person rapidly loses weight, that should be investigated, even if it is part of the ME.

    IIRC, the usual stance in ME (e.g., in the consensus documents) is that small amounts of weight change over a long period aren't a huge issue, but rapid and/or large changes in weight should be investigated. I think that's sensible.
     
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  20. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I agree completely. And so sorry you are going through that and to go through that fear every day and without access to hospital treatment which is a basic human right.

    It is inhumane.

    You are absolutely right.
    It’s not a trivial thing. people are dying because of this. Why don’t people realise? How can we be left like this?

    I have also thought this about the nursing home. If I did not have carers I would not cope in a nursing home. I would not cope with carers coming in to my house even, only my family member and partner who currently are with me - and that’s because they are both so understanding and accepting of M.E. I am so scared of the future because of this and think about it a lot.

    About the passport. I’m in the UK. You are right in that passports should not even be necessary - just having our condition should be enough information. But with autism it varies widely with respect to sensitivities, with some people having hyposensensitivities (under sensitivity) and hyper sensitivities (like in M.E), as well as some being unable to speak etc. And level of speeech / social differences does not indicate level of hyper or hypo sensitivities, so it’s very unique to the individual so I can understand the passport.

    Although an official document would be much better because I still can imagine the level of understanding and willingness to accommodate varies greatly depending on the medical professional.

    I think with M.E it’s simpler in a way as it’s always hyper-sensitivity (as far as I know).
     
    Last edited: Aug 6, 2019
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