UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

Interesting to see 'DecodeME results' billed for May 14th!!
It might happen.

 

@Andy Do you know if the expectation is that some results will be published by 14 May, or Chris intending to talk to the APPG about the results prior publication?

 

No, I don't expect results, complete or otherwise, to be published by then. I'm afraid I don't know what Chris may or may not intend to say.

 

It's maybe more likely to relate to the article mentioned here:
https://www.thetimes.com/uk/healthcare/article/me-cfs-sufferers-ignored-nhs-care-lottery-bxzlxmrm2
Also on UK info thread .

Also members of the LC APPG may not have heard that much about DECODE yet

 

Wrote to my MP yesterday after learning of the date of the next APPG meeting asking him to attend.
I based the letter on the template- first time I've done that but I was exhausted- altering or adding my own information in several places. It did make it a lot easier than starting from scratch. I added that with 3 weeks notice, I hoped his diary could accommodate this.

Was amazed to open my first email this morning to find it was from a Parliamentary assistant saying MP would endeavour to attend subject to any conflicting Parliamentary business- as much a yes as could be expected I think. He's new to Parliament so hope he may get involved in ME. I also hope the 14th May meeting gets a good attendance and that the APPG gets fully involved.

 

I've sent the following:

Dear Ben Maguire,

I am writing to you as your constituent to urge you to join the APPG on ME (myalgic encephalomyelitis) and help fight for those like myself who are suffering from ME.

The next meeting of the APPG will be held jointly with the APPG on Long Covid, on Wednesday 14th May at 5pm; there will an opportunity to attend remotely. Please contact the office of APPG Chair Jo Platt for the invitation.

jo.platt.mp@parliament.uk

The APPG on ME is also holding a briefing session on the government's planned welfare reforms on Wednesday 23rd April at 6pm. Contact Jo Platt's office for more information.

I have had ME since 1995 and, although I am often quite badly affected, I am fortunate not to be one of the very seriously affected. I have a Masters degree in science, yet have hardly been able to work in my chosen field due to my illness. I am now retired, but due to a worsening of the illness I was unable to complete the forms to obtain benefit for the last six months before retirement.

ME is a chronic post-viral illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems. It is estimated that there are at least 1.3 million people in the UK living with ME or ME-like symptoms.

Unfortunately, the healthcare provided to these patients is shockingly poor, and most remain without the support they desperately need. Doctors and other health professionals generally remain very poorly informed, so that eventually most people with ME simply avoid seeking help.

There is in any case no known effective treatment yet for the condition, largely due to the influence of a group of psychiatrists who have wrongly labelled it as psychological.

It is probable that many die due to lack of support and/or lack of income.

I hope that you are able to attend the meeting on my behalf.

Thank you.

Yours sincerely,

 

I noticed the misspelling of 'opportunity' but not the missing word 'be' in 'there will an opportunty'.

I also added Jo Platt's email address and the full spelling of ME as myalgic encephalomyelitis.