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Take part in our Severe M.E. Symposium from home

justy

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if microglia cativated all the time - how are symptoms relapsing and remmiting.
Prof - many diseases show relapsing remmiting - MS - poorly understood. In MS about a third of relapses associated with low level viral infections - leads to further activation.

This is interesting as I experience this.
 

justy

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Talking about colds - for some people having a full cold is a sign of recovery

answering my question now about exercise - he doesn't know the answer...
 

justy

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H question - how to de prime the microglia
Prof - no idea at the moment - looking at what primes the micros in the brain first - they are exploring this to try to stop them priming in the first place - but no work on reversing the priming. Keep an eye on other diseases that contain these issues eg alzheimers, psychiatric dieaseas
 

justy

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Low levels of moderate stress can have effects on the innate immune system in the brain (in mice models)
 

justy

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The changes in the brain ARE physical - as physical as it gets, but it can cuase emptional symtpoms - depression anxiety etc
 

justy

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Sonya Chowhury up next - no my bad - parent and carer testimony and short film
 

Min

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She says 93% of people with severe M.E. are not in work.

Er...what illness is she talking about? How can 7% possibly be in work. Maybe AfME have redefined the meaning of 'severe'?

AfME say they don't know how best to support people with severe M.E.

They best way would be to stop working with the Wessely school of psychiatry.
 
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justy

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Synopsis of the round table discussions (by AFME):

Table one: lack of specialist clinicians
Table two: lack of research
Table three: fragmented services, and no continuity of care
Table five: education of GPs
Table four: lack of info and support for carers - whose job is to share this information?
Tables six and seven combined: people with severe M.E. not treated with dignity and respect, shown by lack of support in claiming welfare benefits
Table eight: lack of key trained experienced knowledgeable key workers for people with severe M.E.
Table nine and ten: patient should be in control but those most severely affected often unable to - so responsibility falls on carers
Table ten (apologies, previous table was just table nine!): what about people with severe M.E. who don't have carers?
Finally, our virtual table: the need for recognition of the severity of symptoms, and the need for advocacy.
 

justy

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finally worked out how to copy the agenda:

b959e029-7dda-48d8-b652-8d8ebaa8102e.jpg
 

justy

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talking about a research project at Southampton

'What is the current NHS Service provision for people with Severe M.E' slide taken down, cant read the rest
 

justy

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Lots of talk about GET CBT and activity management being offered to severe patients - I want to ask a question about this but not sure how to put it - any ideas? She is only reporting what they found - no discussion of the relevance of any of this. Anyone have a good question?