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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. Trish

    Trish Moderator Staff Member

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    Thank you @lunarainbows for sharing the information about the autism passport. We definitely need something similar, and so well recognised, for ME. I wonder how on earth we go about getting it.

    It would be great if the NICE guidelines would include it. From what I gather from the descriptions about how the NICE guidelines operate, it would mean some organisation with clout would need to contact NICE to request it. And we would need solid evidence that NICE would recognise.

    Why is everything we need such a mountain to climb? And why is it left to sick people to try to climb it alone? Why are so many 'health professionals' building barriers against us instead of giving us a helping hand? Why are some of them even throwing rocks at us as we try to struggle up the mountain? Where are the crowds of doctors fighting our cause?

    Sorry, ignore that last paragraph. I'm in a melancholy mood today.
     
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  2. Amw66

    Amw66 Senior Member (Voting Rights)

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    perhaps something that the ME Patient Foundation could champion?
     
  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    What would we need in an ME passport? Here are some badly thought through suggestions.

    For me I would consider the following topics:
    • Hypersensitivity to light/noise, need for appropriate environment
    • Orthostatic intolerance, may need to lie horizontal
    • Brain fog, at times trouble following conversation or remembering things
    • Food intolerances?
    • Walking more than a few yards make trigger crash?
    • Variability of the condition, because we can do something once may not be able to do it again?
    I guess others might want to include
    • Chemical sensitivities, smell
    • Problems with temperature regulation
    • Sensitivities to some medication
    • Issues around anaesthetics
    Because of the variability of our condition would it be better to have a pick and mix of options rather than a single universal format. Though it could be having a format that people could self edit might make it harder to get organisations to endorse it.

    Could it be possible to have something that had something with a more general statement on one side, endorsed by various national/international groups, then a short list on the other side selected by the individual? If an organisation endorsed it they could have it on their website in an editable format that could then be printed off directly or saved to a pdf format. This would also allow for different layouts, wallet sized card, passport format, A4 sheet, etc as per personal preference.

    When working with adults with communication difficulties, I found some people liked a formal card from an official body but others preferred something more personal with could vary from a card or passport, to an information sheet, to a Filofax type folder to an A4 ring binder.
     
  4. Alis

    Alis Established Member (Voting Rights)

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  5. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    @Peter Trewhitt @Trish i have some ideas about an M.E passport how to take this forward and some other ideas re sensitivities but will reply as soon as I’m able to, in a bit of a crash. Xx
     
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  6. WillowJ

    WillowJ Senior Member (Voting Rights)

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    That's a good point about missing other conditions.

    I have had large rapid changes in weight that seemed to be from my ME (though one instance had something else going on also--but probably the ME complicated it). Tends to occur when I have increased activity, or had an infection. (Even if I was mild at the time I increased activity.)

    What I was hoping to see was some research on: what's driving all these food intolerances? Can it be modified? Why do some people with ME get to a very low weight (whether slowly or quickly, but is there a difference between the slow drops and the fast ones?) when they don't seem to have some other cause that's not ME (and "IBS")? Why do others not?

    I am not able to follow the news closely any more so I probably missed things and maybe they are researching some of this.
     
  7. JemPD

    JemPD Senior Member (Voting Rights)

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    Relate to that. They simply cannot grasp the utter, utter torture of sensory input when bad. My neighbours set up a hot tub in their garden, I could hear it everywhere in my house & they kept it on24/7 so it would be warm whenever they wanted it. I honestly felt suicidal. I prayed for death just so it would end & it wasn't even loud. Everyone said I was over reacting but i'm certain if they'd been in my body they'd have understood.


    And part of the problem, imho, is the word 'sensitivity'. When people are told this person is sensitive to light & sound, they think it means either 'this person doesn't like sound/light' or 'it upsets them', or they think 'this person is a delicate flower - ie weak & pathetic - a 'snowflake'.
    I'm 'sensitive' to alcohol in skin care products - it makes my skin go a bit red. Certain foods give me gas because i'm sensitive to them. It is nothing compared to the all out catastrophe that is the impact of too much sensory stimulation, especially in an ongoing way.

    So for me this term is every bit as bad as calling very severe ME 'chronic fatigue'.
    I'm afraid I don't have an alternative, I just feel that 'sensitivity' is unhelpfully interpreted, wish we had a better way of explaining it

    I agree, if I had the chance to get rid of just one symptom it would be that. I've read other severe sufferers say the same & it frustrates me that it's mostly ignored by researchers.

    Edited - adding more paragraphs
     
  8. JemPD

    JemPD Senior Member (Voting Rights)

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    Sound making me ill is one of the most isolating things there is. It's what forces solitary confinement on me. And if the researchers/Drs could actually take in that it isn't an exposure problem... the more I am exposed the worse the effect, not the other way around... perhaps we can get somewhere. But while ever they are deaf to that & think to themselves, 'well of course light & sound become overhwleming if you live in a silent dark room'... …..

    When well rested I can listen to music but as I spend my "energy" processing it, it becomes intolerable no matter how much I 'like' the music. As if there is a dial somewhere controlling the 'volume' for all my symptoms, & sensory input has it's hand on that dial... So ALL symptoms increase as it turns up the volume. Imagine having a dial for the symptoms of a fever (for example), and sound had it's hand on the dial, so that every sound dialled up the fever...
    Sound & light & vibration are not merely unpleasant because I am ill (as they are with a hangover/migraine etc), they actually MAKE me ill, in & of themselves.
    Sound that I love makes me ill.


    I don't understand why that is not of interest to researchers, even if it's only relevant to severe sufferers. Would not looking for how a person can be, in effect, allergic, to sensory input be an interesting avenue?


     
  9. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Sound is one thing that can still tip me from coping to frying!

    I’m not severe. I can be out and about. But not in noisy places. I carry ear plugs in my handbag - they are ones made using my ears as a mould so are fairly good I think, but they don’t stop all sound.

    Recently I went to the cinema with my hard of hearing sister. We had quite a laugh, because as I was putting in my ear-plugs to dull the noise, she was lamenting the lack of sub-titles! What a pair were were!

    Yet, I still had co-ordination and speech issues on leaving the cinema, despite using my earplugs! It has sorta put me off going to the cinema again. The sound is really turned up much too high! Meh!
     
  10. Daisybell

    Daisybell Moderator Staff Member

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    The cinema is something I really struggle with now - I can only go if the film is not an action film, and then I need earplugs. I always feel ill going, so I hardly ever do. I spend half the time with my eyes closed and my ears blocked!
     
  11. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I’m only noticeably affected by sound right at top of over exertion. But Ive unconsciously stopped listening to music other than classic fm or and on tv I have again unconsciously developed the habit of having the sound fairly low and putting subtitles on.
     
  12. Ravn

    Ravn Senior Member (Voting Rights)

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    Not specific to ME but these may be useful as a starting point to generate ideas? The second document has a section dedicated to sound and noise sensitivities.

    Disability Alert (2 pages): https://www.ccdhb.org.nz/our-services/disability-responsiveness/disability-alerts/dss-form.pdf

    Health Passport (20 pages), download here: https://www.hdc.org.nz/disability/health-passport/

    Both documents are from NZ. Has anyone used them, or similar ones? How did it go?

    It's probably a good idea to have 2 versions, a short one for GP visits and similar, and a longer, more detailed one for hospital or care facility admissions. Or else 1 long one but with a summary of the most important points up front to increase the likelihood at least that part of the document will be read.
     
  13. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Hi. @Ravn that health passport looks very good but I think it is definitely too long, particularly in the hospital where (I’m sure we’ve all had these experiences) they are so pressed for time that even getting people to read 6 pages would be pushing it. So these are my first thoughts:

    1) an M.E “alert card”. Similar to disability alert but also similar to an autism alert card, which I have, and which is very useful. Please see this link: https://thegirlwiththecurlyhair.co.uk/product/autism-alert-card-the-girl-with-the-curly-hair/ this kind of card is kept in our wallet. It does not have all the information, and is not specific to our individual circumstances, (unlike the hospital passport), but it can be quickly shown to anyone we need it to be shown to - doctors, paramedics, friends, family, bus drivers, even cinema staff!

    I know the M.E association have an alert card but I’m sorry I think it’s really not good. All it says is “M.E is complex neurological illness with wide range of disabling symptoms”. This is simply not good enough. It needs to specify the sensitivities as when we are out and about, that is one of the biggest barriers for inclusion into society (at the milder end), up to actually stopping us from going into hospital for life saving care and even stopping us from receiving care at home (at the severe end). As well as specifying what people can do to help us.

    So, something like

    “I have M.E.
    M.E is a complex neurological illness with sensitivities to light, noise, touch, taste, and smell, all of which can be extremely severe. They can cause me pain and make me very unwell.
    I may have problems with balance, dizziness and fatigue which can be severe
    I may have problems with thinking and concentration
    I may have difficulty speaking, or be unable to speak
    I may have difficulty walking, or be unable to walk at all.
    I may have difficulty sitting up for short periods of time, or be unable to sit up at all.
    I may have difficulty regulating my body temperature, and may feel too hot or cold

    You can help me by:
    Recognising that I do have sensory processing difficulties
    Using clear language and giving me time to think and respond
    Understanding that I may not be able to speak for more than short periods of time, or at all
    Recognising that I may need a quiet and dimly lit space to wait, away from crowds and noise and light
    Recognising that I am unable to tolerate extremes of temperature
    Recognising that I may need somewhere to lie down, or sit
    Recognising that I am unable to move around quickly”

    This is how the autism alert card is worded, the word “may”, because depending on severity everyone’s situations in different, however, it is very important to include how bad it can be for very severe people, and also allows for the fact that it is a sliding scale.

    I think something like this card needs to be made. We can work on the wording with other people’s input.

    (It’s also interesting to see how much overlap there is between autism and M.E, I used a lot of similar wording from the autism alert card! ESP with regards to sensory processing and cognition).

    This kind of card is usually printed double sided, that we can just keep in the wallet. This will also help with awareness.

    But how to get this sort of card made?! Please help! Which charity could do it? How do we raise funds for it?

    (Edit; Infact it looks like we can get this made just by ourselves, without needing an organisation, only difficultly is promoting it so people have access to it and know about it; and needing funds for start up - I have no idea how much it would cost?)

    I’m going to write another post about the hospital passport, which is a different thing as that would be on paper, a few pages long, completely adaptable and specific to us, and kept in GP records etc similar to autism passport.

    Edit 2: the NAS has an alert card whereby you have a credit card sized card. Then you have a fold out piece of paper with even more info on it which also sits in the other part of the wallet. It’s really good. That’s another idea if we don’t have enough space for all the info above. I’ve also edited it to add info on temperature, as I forgot peter had mentioned it above :)
     
    Last edited: Aug 7, 2019
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  14. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    ME Assocuation have an alert card

    There’s also a woman online who has put together a range of useful cards
     
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  15. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I just mentioned the ME Association alert card in my post above. I don’t think it’s good enough. Could you give a link to the lady who has put up other cards?
     
    Last edited: Aug 7, 2019
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  16. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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  17. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    2. The M.E passport.

    The wording that was mentioned above by @Peter Trewhitt and also taking on board the health passport from NZ posted above - I think together we could work on something and make like a 5-6 page document that could be taken into hospital. It would be adaptable to our specific circumstances and symptoms. The thing is, before working on it, I think we should reach out to a charity who could do this with / for us.

    Because, as @Trish says, it’s better to get it endorsed by NICE in some way. So that it’s official. Because otherwise it could be easily dismissed. The thing with the autism passport is that even though it’s unofficial, there is now a lot more awareness and understanding of autism so as soon as people see the words, and I tell them I have sound light sensitivity, they’re able to link it. We don’t have that sort of recognition in M.E.

    So:
    1) If it is officially recognised by NICE first that we have these severe sensitivities, that would help us.

    Light, noise, touch, taste, smell.
    This means crowds and bright lights can be unbearable as well. Waiting rooms. Hospital rooms.

    (I agree with balance but that is more of an internal sense, similar to proprioception - that should be included as well but I think that is a slightly different category.)
    It’s so useful to have all these anecdotes about how difficult and unbearable people find sensory information, and actually how it increases symptoms as well

    Also it’s there across the severity from mild to very severe. I hope these anecdotes can be presented in some form to the NICE committee?

    2) if we can form a sort of “working group” of people, also working with a charity or organisation who can come up with a document called an M.E hospital passport, that we can get officially endorsed by NICE. Would anyone with any experience or ideas be able to comment how we could go about such an idea? Someone mentioned the M.E patient foundation. Will this be enough for NICE to take it on board?

    Have edited to add that this would be adaptable and specific to our symptoms as it’s a few pages of A4 which would have a template which you fill in.
     
    Last edited: Aug 7, 2019
  18. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I like this. I’ll be ordering one. But I think there could be more, saying what we really need from people, and emphasising the sensory processing. I do think it would be really useful if we could come up with a card similar to the one I’ve written above as well - more similarly worded to the autism alert card - telling people what we need, what they can do for us, and the specifics of our sensory processing / not being able to sit up etc.
     
    Last edited: Aug 7, 2019
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  19. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Also, before I forget to mention, just a suggestion for people with M.E who are finding cinemas difficult, you can go to the autism cinema screenings. They are held in nearly all the cinemas around the country - usually 1 or 2 a month , at certain times - it’s not just for people with autism, it’s for anyone with sensory processing issues, caused by other conditions as well. I even know of people with severe anxiety who go there.

    Contrast is turned down (contrast between bright lights and dark room)
    Lighting on cinema screen is dimmer
    Sounds are turned down
    No adverts
    You are able to walk around if needed, or need to go outside quickly to escape the stimulation, with no worries as to how people will perceive you

    @Daisybell @Keela Too or anyone else

    https://www.dimensions-uk.org/get-involved/campaigns/autism-friendly-cinema-screenings/

    :)
     
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  20. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I would be happy to support a working group, and agree something that is perceived as having some form of ‘official’ backing would be much better, so a link with a charity from the start would be a good idea.

    I still like the idea of something that was partially adaptable to reflect an individual’s specific issues. For example, something like the Stickman Communications card could have a list of points on the back including hypersensitivity issues that included issues specific to the card holder.

    In terms of creating a web based facility to create personalised cards or passports I have no ideas how complicated the coding would be and how expensive this might be. But certainly such an option would require a host website and an existing charity might be the best vehicle for that. Then there is having an option for the person to have any printing done themselves versus the option of the host organisation being paid to print it/them off and posting it out, which would only work easily if the host organisation already had some form of online sales.

    Getting a bit confused at the minute but will come back to this later.
     
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