Petition: Debate in Parliament the lack of an effective policy for the treatment of M.E.

Jo Best

Senior Member
Messages
1,032
Likes
6,229
In case you missed it as originally posted in 'Action Alerts and Advocacy': https://petition.parliament.uk/petitions/200066

Petition created by Ed Lewisohn aiming for 100,000 signatures as his previous petition had to close early at nearly 11,000 signatures because of the UK General Election in May 2017.

It's on the UK Government and Parliament petition site so only UK residents or British citizens may sign.

The wording is:

Myalgic Encephalomyelitis (ME) means "muscle pain plus inflammation of the brain/spinal cord", a chronic neurological illness, but "the majority of patients presenting with symptoms of ME in the UK are still referred to psychotherapists for treatment" (Dr Ian Gibson). A policy review is overdue.

More details

The NHS provides psychiatric therapies for what it refers to as "CFS/ME". These therapies are often ineffective and sometimes make patients worse. They are the result of a Myalgic Encephalomyelitis policy heavily influenced by psychiatrists who are skeptical about the existence of Myalgic Encephalomyelitis. It is time for a policy re-think about the effectiveness (and cost-effectiveness) of current treatment.
See: http://www.tymestrust.org (for the effect of current policy on children with ME).

Deadline13 March 2018

All petitions run for 6 months

https://petition.parliament.uk/petitions/200066
 

Demepivo

Dolores Abernathy
Messages
411
Likes
2,247
The reason behind of the Early Day Motion (EDM) signed by 60+ MPs & the parliamentary showing of Unrest was to lead to a debate.

The next stage is to organise the debate. Senior figures such as Steven Timms, Vince Cable, Ed Davey and Nicky Morgan are involved. The Unest showing took place in the Speaker's House and John Bercow is a patron of the ME Association so it is clear we have his backing.

A lot of lobbying has taken place by Sarah Reed of ME Action Network UK & her husband Andy who is a former MP.

I would ask you to continue to talk to MPs to get them to support the EDM as well as signing the petition posted by Jo Best.

https://www.parliament.uk/edm/2017-19/271
 
Last edited:

Jo Best

Senior Member
Messages
1,032
Likes
6,229
@Demepivo thanks for the update.
It's good to see proactive patient power in action with these complementary initiatives.

The petition by Ed Lewisohn is a relaunch of his petition that had to close early in May because of the general election. The petition was inspired by the book published in March by former MP Ian Gibson and Elaine Sherriffs, which Sarah Reed tweeted about, 'Science, Politics, and ME'.


Ian Gibson was at a screening of Unrest and a patient wrote,

"He feels passionately about this subject & we could not have a better person on board with the fight we have. Every word spoken was brilliant!"

Ian Gibson chairs the Invest in ME Research annual London conference, which was attended this year by Jen Brea and Omar, along with David Tuller and representatives from NIH and CDC.

The upshot of the last EDM for ME is described in this ITV news report at the time.
https://www.youtube.com/watch?v=CalHKUZvYAA
 

justy

Donate Advocate Demonstrate
Messages
5,524
Likes
12,233
Location
U.K
I would ask you to continue to talk to MPs to get them to support the EDM

https://www.parliament.uk/edm/2017-19/271
thanks for this - i looked at the list of signatories and it seems my MP has already signed the EDM, so i worte to thank him, tell him a bit about myself and a very quick precis of latest research etc.

Its a good opportunity, if your MP has signed it to thank them and tell then more. I also asked him if he had been to the parliamentary screening of Unrest, apologized for not being able to let him know about it sooner and asked him if he had not gone if he would consider watching it on I tunes when it comes out late October. My MP is very young,at only 24, so will be interesting to see how he does and perhaps get him on side.
 

Demepivo

Dolores Abernathy
Messages
411
Likes
2,247
It's good to see proactive patient power in action with these complementary initiatives.
Agree, it's complementary. Sarah Reed knows Ian Gibson well. Her husband was a colleague of his when they were both MPs. Hopefully he is involved in the current lobbying of MPs.