M.E. discussed Live now on channel 5 wright stuff

[Ambrosia_angel]

If it comes on line can someone post it please ?
Interested to see any media coverage'

thanks for post

ALly

Firestormm just posted it. Can you not watch it from Australia.

 

[manna]

i thought it was pretty good really--considering afme behaved themself and were by no means the only input. knowing what i know about afm.e. makes it all a bit confusing. it worries me that folk would get a good impression of them from this and yet ultimately these people don't, till now, seem to be in our corner. many folk who have no idea of their activities would easily think they were good advocates and probably subscribe etc. i wonder how the choice for which me/cfs charity to attend was made? nice one the adam fella...i remember him from years back. i think if afme had even mentioned much on the psyche angle they'd have looked pretty silly as the general consensus, on the show, was physical.

 

[golden]

i thought it was pretty good really--considering afme behaved themself and were by no means the only input. knowing what i know about afm.e. makes it all a bit confusing. it worries me that folk would get a good impression of them from this and yet ultimately these people don't, till now, seem to be in our corner. many folk who have no idea of their activities would easily think they were good advocates and probably subscribe etc. i wonder how the choice for which me/cfs charity to attend was made? nice one the adam fella...i remember him from years back. i think if afme had even mentioned much on the psyche angle they'd have looked pretty silly as the general consensus, on the show, was physical.

I am only just catching up on all the M.E. politics. I think I may have read on PR a statement from 'Sonya' from A$ME now come to think of it stating they have turned over a new leaf and will now be pushing for concreting this illness squarely in the realm of the physical. That is good news if its the case. I am sure it all could have been a lot worse.

It would be good if action for M.E. would perhaps get some other speakers involved too - surely a speaker say from 25% or MEA could attend too or instead for example.

I am assuming Adam is the coronation street star here? He was the only one who definitavely stated that M.E. was not a mental illness when there seemed to be some comparison with CBT for mental health clinics being shut down and the 'Specialists Units' being closed down. It made it sound like there is actually help out there from the NHS. Its also about what was NOT said in the time slots that bothered me. Plus the subtle communication.

I am frustrated with myself for not being able to capture what I wanted to say about it...and lazily hoping someone else would have been able to for me lol

If I knew nothing of M.E. - I might liken what I heard on this chat show to a mental health issue. And it was the way in which some key phrases were used - 'Paul', in the audience worked full time with M.E. and said he 'just needed a bit longer to recover' than normal people after doing stuff. Granted he said other things too - such as people only see him with his best face on a work and not collapsed at home.... but this is not what happens to me.

The first caller was Catherine I think who had severe M.E. in the eighties and nineties/noughties - and went to the Specialist centre -

At this specialist centre in Essex, they assessed her and she had lost 6 stone ish I think and was only sleeping 3 hours a night and so the first thing they did was address her sleep issue and then after she was sleeping again - this made her body heal to a good standard of living. She said it was a myth that M.E. people all sleep 20 hours a day. And was very upset that these 'Specialist' clinics are all being shut down. When Sonya was asked what they do at these specialist centres I think it was side stepped pretty well as she said it depends upon who is leading the team... but she did answer something like acknowledgement and understanding of M.E., something else and Hope.... YUK - I definately dont want to go to a

pretend specialist centre under the guise of understanding and acknowledgement and be dribbled hope!

The second person caller didnt even have M.E. but fibromyalgia.



@manna- I am sorry to hear of your situation with your neighbours....in my case when I stopped being able to drive them round, look after their animals, do their shopping etc. etc. and I needed my boundary wall back...bad feeling grew.

 

[golden]

Where was all the callers and advocates speaking of all the damage done from the NHS and 'Specialist Centres'???