This is what is meant by "Noise Sensitivity"
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This is the impact of noise in Very Severe ME; this is what is meant by "Noise Sensitivity". This is how my wife's whole day has been.
Very, very few know, even fewer understand.
55 REASONS why NICE must recommend a home visiting, biomedical service, for people with Severe Myalgic Encephalomyelitis
Stonebird
People with Severe and Very Severe ME are not safe within the current health system; this is not an exhaustive list by any means : 1. It is virtually impossible for the most severely affected to travel to a clinic or a hospital.
2. It is extremely difficult to find a knowledgeable GP or consultant .
3. There is little, if any, choice of biomedical ME consultants.
4. Knowledge of how to approach or communicate with a person with Very Severe ME is minimal.
5. The system expects people to fit into it and is not very accommodating of those who cannot.
6. Hypersensitivity to touch makes physical contact unbearable, dangerous, impossible without harming the person with Severe ME.
7. Hypersensitivity to noise makes it difficult to impossible to bear the sound of the voice of the GP or consultant, let alone all the background noise and any other noise exposure.
8. The impact of noise may cause the person to be damaged and physically harmed for weeks, months, even indefinitely.
9. The impact…
People with Severe and Very Severe ME are not safe within the current health system; this is not an exhaustive list by any means : 1. It is virtually impossible for the most severely affected to travel to a clinic or a hospital.
2. It is extremely difficult to find a knowledgeable GP or consultant .
3. There is little, if any, choice of biomedical ME consultants.
4. Knowledge of how to approach or communicate with a person with Very Severe ME is minimal.
5. The system expects people to fit into it and is not very accommodating of those who cannot.
6. Hypersensitivity to touch makes physical contact unbearable, dangerous, impossible without harming the person with Severe ME.
7. Hypersensitivity to noise makes it difficult to impossible to bear the sound of the voice of the GP or consultant, let alone all the background noise and any other noise exposure.
8. The impact of noise may cause the person to be damaged and physically harmed for weeks, months, even indefinitely.
9. The impact…
Sensory signals are amplified and modified by several mechanisms. Something is terribly wrong in sensory processing in ME patients. We need to find the “broken” mechanism. It could be an autoimmune attack on ..??? We need more research!!!
ReplyDeletehttp://followmeindenmark.blogspot.dk/2013/09/transducer-and-amplifier-in-mecfsmcspain.html Sincerely Helle Nielsen
There is knowledge from other diseases that could help us understand ME, and give us ideas for new research: "Hyperacusis in patients with complex regional pain syndrome related dystonia" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2095603/ and this quote "The sensory abnormalities may include a sudden increase in sensitivity to light, noises, smells, tastes or textures of foods or items of clothing.." from "DOPAMINE (post-streptococcal) related autoimmune encephalitis" http://pandasnetwork.org/wp-content/uploads/2013/07/Dopamine-related_autoimmune_encephalitis.pdf Helle Nielsen
ReplyDeleteSorry. forgot this one: Vestibular Hyperacusis. Are you sensitive to certain sounds? http://vestibular.org/vestibular-hyperacusis Regards Helle
ReplyDeleteHas she ever been tested for Lyme Disease? A lot of ME patients are finding they have Borellia infections.
ReplyDelete