Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

TiredSam

TiredSam

The wise nematode hibernates
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Germany
A rare picture of TiredSam awaiting the call from the Monstrous Regiment of Women of the South West

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Countrygirl

Countrygirl

Senior Member
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UK
TiredSam said:
Oi - you forgot someone. If you're not going to include honorary members I'm taking this bloody dress back to the charity shop.

3227
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I am so sorry @TiredSam !:redface: Mortified! :eek:

To express my sincere apologies, I have added one of our favourite photos of you in your little black dress. I do hope it doesn't embarrass you but you like quite.................er..................not as we expected.



TiredSam honorary member of the Monstrous Regiment of Women - SW Branch, sporting –er- his favourite little black number


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Countrygirl

Countrygirl

Senior Member
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UK
Below is an extract from Dr David Tuller's latest piece in a section referring to the lack of review by NICE

http://forums.phoenixrising.me/inde...rror-the-cdc-drops-cbt-get.52748/#post-873668.........

has anyone asked him to sign the MEA's petition??


The CDC has a long history of collaborating with key members of the PACE team and others in the U.K. medical and public health establishments; it is not surprising that prescribing CBT and/or GET should have become standards of care in both countries. It is now incumbent on U.S. public health officials to alert their British colleagues, including those at NICE, that they have just abandoned these longstanding recommendations. They should also explain why they have taken that major step, and why NICE should consider doing the same. (More on the NICE guidelines later this week.)
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Countrygirl

Countrygirl

Senior Member
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Location
UK
Here are a few of the comments from the petition.

I did Graded Exercise Therapy in good faith when I was mildly affected by ME. It put me in a wheelchair. Now I am housebound and need to be in bed 22 hours a day. There are no mention of harms of Graded Exercise Therapy in the NICE guidelines, and thousands of patients are being harmed every day. We now have scientific evidence of why GET is dangerous for ME - this needs to be taken into account before any more ME patients - both adults and children - are made disabled.
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I have been ill with ME/CFS for nearly five years and fed up of being discharged and considered uncooperative by the CFS Service, OTs and physios because I'm not "helping myself" by failing to do Graded Exercise Therapy. Many days I have to choose between having a shower and making myself something to eat. If I could gradually do more I damn well would! None of us choose this life. No one would!
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NICE clearly don't understand that the PACE trial has no scientific merit whatsoever. It has been comprehensively demolished in every way. It is based on a false premise and, because it is founded on the Oxford criteria, it isn't a study of ME/cfs anyway. To base treatment decisions on such a fundamentally flawed study, is grossly irresponsible, if not criminally negligent.
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I am a divorced mother of three, had severe ME/CFS for three years and am desperate for REAL help. My children need me !!!!!! The help and guidance on offer are NO GOOD AT ALL !!!!
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Even the US CDC has updated its website removing recommendations of GET. We know the treatment is not simply unhelpful but actually causes damage. NICE must update. Lives are at stake.
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C

charles shepherd

Senior Member
Messages
2,239
We have also abandoned our MEA monthly website poll to ask about the NICE guideline review

This poll gives people an opportunity to support the NICE guideline if they want to do so

Vote via home page on MEA website: www.meassociation.org.uk

Results so far tonight:


  • Do you think the NICE guideline for CFS/ME is working for you?
    • Yes - I think it is (0%, 0 Votes)

    • Yes - but it could be better (1%, 2 Votes)

    • No - I think it needs a minor review (2%, 4 Votes)

    • No - I think it needs a major review(95%, 177 Votes)

    • I am not sure (0%, 0 Votes)

    • What's the NICE guideline? (2%, 4 Votes)


      Total Voters: 187
 
Binkie4

Binkie4

Senior Member
Messages
644
Have found that my husband's ( he's my carer) contacts are gathering more votes. Ex colleagues, his current club colleagues, activities he does, are responding, one even from USA. They are even asking more about ME. One has shared that he has two brothers with ME and thinks he is developing it.

Of course, he is out and about, very visible in the world from day to day. I have barely been seen for 10 years. It does make a difference. Sad.

So if you are lucky enough to have a carer, ask them if they will use their contacts to spread the word.

We need big numbers for this petition.
 
Ben H

Ben H

OMF Volunteer Correspondent
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1,131
Location
U.K.
Signed+family. And trying to promote on Twatter. I mean Twitter. (I like it really, but there is only so many rogue 'Love Island' retweets one can take).

I think its important that even our non UK friends are able to sign due to the influence NICE has on worldwide policy. Whether that will actually change anything, I'm not sure.

B
 
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