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

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.
 
Andy said:
On a side note, I've emailed Carol about the duplicated text in the EDM, "which aims to aims to highlight".
Click to expand...
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.
Screen Shot 2018-05-09 at 16.10.52.png

If you see your MP there, please send them a message to thank them.
 
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.
 
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Unfortunately my MP is one of those who doesn’t sign EDMs “on principle” because she doesn’t understand the point of them. I will still use the EDM to write to her though in the next week asking for the meeting her assistant said I could have in the autumn but I haven’t been able to take them up on. She’s a very opinionated person who gets on the telly a lot I’ve heard on the grapevine that she is dismissive of ME so I will need to be well prepared.
 
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