ME Association: ‘ME Awareness Week 2018’ New Early Day Motion Launched by Carol Monaghan MP

‘ME Awareness Week 2018’ New Early Day Motion Launched by Carol Monaghan MP | 09 May 2018

http://www.meassociation.org.uk/201...on-launched-by-carol-monaghan-mp-09-may-2018/

An early day motion has been launched by Carol Monaghan MP, and she needs your help in asking other MPs to sign the motion increasing the chance it will lead to an actual debate in parliament…

 

The actual motion - https://www.parliament.uk/edm/2017-19/1247

Currently the 15 signatures are all from members of the Scottish National Party.

 

Cannot tell from the link - what is the deadline for getting signatures?

 

I have sent the following to my MP:

"Dear Mr Mann,

I must trouble you again and ask you to sign EDM 1247 which reads:

"That this House recognises Myalgic Encephalomyelitis (ME) Awareness Week from 6 to 12 May 2018, which aims to aims to highlight the impact this invisible illness has on 250,000 people across the UK; recognises the fantastic work campaigners and charities are doing to highlight ME as a physical condition which is not all in the mind; acknowledges the detrimental effect of the PACE trials and its results, and the work which is being done to reverse this; and encourages people to go blue for ME across the week, to further bring this illness out of the shadows and into the spotlight.”

I have passed another year with this illness, being almost unable to visit my doctor at present due to poor cognition. That's 23 years. I am now retired, although I probably missed out on the last six months of earning a pittance from selling plants due to worsening. The worsening most of us suffer might be avoided if we could get better support, as the illness is made worse by exertion. Perhaps some of us could even recover with better help and support. Instead we have to battle on, with the inevitable ill effects that this has.

I have a Masters degree in science! I should have made something of my life.

I know that the guidance for medical professionals is being reviewed. But some of us cannot wait quietly for the two years that this will take.

Some of us die, either by our own hands: https://www.s4me.info/threads/in-memory-of-bob.2861/

or from the illness: https://community.scope.org.uk/discussion/44058/losing-my-young-adult-daughter-to-m-e

This cannot continue.

Thank you.

 

Good job @MeSci

On a side note, I've emailed Carol about the duplicated text in the EDM, "which aims to aims to highlight".

 

Now changed on the Parliament website, I posted on the MEA Facebook post about this as well, for them to amend their website if they want.

Now 22 MPs signed.


If you see your MP there, please send them a message to thank them.

 

Thanks - have sent him this one instead, which also links to the JustGiving site:

https://www.s4me.info/threads/weds-...ilence-in-memory-of-bob-robert-courtney.3493/

 

I have written to my MP asking him to sign (with link) and to contact Carol Monaghan to express his interest in this issue.

Also said that a priority this year will be to get NICE to withdraw CBT and GET now. He signed the petition for that but there may well be additional work this summer.
Also said that lots was happening in the ME world ( Unrest, David Tuller, Millions Missing etc) and that I hoped to speak with him soon.


Just to add that apart from MPs who have an interest getting together, I am not aware of any particular actions being organised by Carol M. I know she attended Forward ME. I don't know if anything came out of that that we need to be working on.

 

I've just emailed my MP for the third time, including a link to the EDM! (The same numbers are used again and again so I thought it would make it clearer and easier to find.)

 

i do feel we should be taking Carol's work forward in some way. Does anyone know if anything is planned?

Sorry- just have to go to bed.

 

Now 28 signatures. Screenshot below shows the newer signatures which duplicates a couple from my screenshot up-thread.

 

Emailed my MP yesterday evening, but he's not signed so far. Fingers crossed.

 

38 signatures, new ones below.

 

Does anyone know if the minutes of the Forward ME meeting that Carol Monaghan attended have been posted?

 

These? http://www.forward-me.org.uk/28th March 2018.htm

 

Sent to my MP, I’m not holding my breath though

 

Thanks @Andy.

Just glanced over them but couldn't see anything recorded re a discussion involving Carol and where/how her campaign is going. Is she going to continue being involved in /with Forward ME? There has been a meeting since then on 1st May, but no minutes yet registered.

 

Maybe the principle in question is really that they don't like publicly committing themselves.