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

I still believe that people's real agendas are not always what they present them as, no matter how genuinely and sincerely they seem to do so - especially when they are politicians .

 

Totally agree with this.
I managed to see my MP on 23rd March.............he listened as politely as he could manage but didn't even give me my allocated 15 mins, I only got 10. Says it all really.

He asked me to send a brief summary of my experience and what I'd like him to do.

This I did..............no reply. Not even an acknowledgement I'd sent an e-mail.

Anyway I asked for feedback a couple of days ago and I've sent this EDM request but I'm not very hopeful to be totally honest.

So I keep practicing the calm deep breathing and making the best of each day ...............

 

Well done for trying @janice. Of course, the cutting your time short, not bothering with with even the basic courtesy of acknowledging receipt of your email just underlines the complete ignorance and the fact this person didn't listen and couldn't be bothered to try to understand the nature of your disability.

How rude. How lacking in awareness of how to engage with constituents with disabilities.

 

45 signatures, new ones below

 

This may be unnecessary - but do we have to be cautious about Monaghan because of the developments in Forward-ME? I still don't know what went on there, and it's always a bad sign if politics meet intransparency (although they are nearly inseparable, haha).

 

For better or worse, I've written. Despite misgivings about the 250,000 and 25% figures, I've used these for concreteness. If anyone wants to use this or improve on it for contacting your own MP, be my guest.

"I am writing to ask whether you would please sign EDM 1247, in support of ME Awareness Week.

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

As your constituent, and a ME (myalgic encephalomyelitis, also known as chronic fatigue syndrome) patient of nine years and counting, this issue is extremely important to me, as it is to many others. ME/CFS affects circa 250,000 people in the UK. With 650 constituencies in the UK, this gives a mean of 385 ME patients per constituency (not factoring constituency size or variance in population density). It is estimated that twenty-five per cent of sufferers are severe, being house or bed-bound, often for years. I was bed-bound with severe ME for five years, and remain significantly unwell and substantially functionally impaired. The sickest may require tube-feeding, subsist in dark rooms as they cannot tolerate light, require significant care for every aspect of their much reduced circumstances, and may lack the strength even to communicate verbally.

Biomedical research into ME has historically been and continues to be woefully underfunded, despite unequivocal abnormalities evidencing an organic medical condition. ME is frequently regarded as a psychiatric disorder within the medical profession, with some healthcare professionals of the position that they simply don't believe in it. This despite recent research findings that participants with ME/CFS were measurably more disabled than participants with Multiple Sclerosis ( https://doi.org/10.1007/s41669-018-0071-6 ). Such characterisation of ME/CFS leads to stigmatisation of patients, social-distancing, depreciation of illness-severity, and patient blaming.

The current NICE Guideline on ME (CG.53) recommends cognitive behavioural therapy (CBT) and graded exercise therapy (GET) for ME patients. One of the cardinal symptoms of ME is exercise intolerance; over-doing causes worsening of symptoms and may cause a complete relapse in condition. This makes blanket recommendation of these treatments for ME/CFS patients wholly inappropriate and potentially extremely harmful. The £5m PACE Trial ( https://doi.org/10.1016/S0140-6736(11)60096-2 ) - the keystone research in the evidence base for CBT and GET for ME - is the subject of a number of substantive methodological criticisms, and a recent reanalysis paper of the PACE Trial ( https://doi.org/10.1186/s40359-018-0218-3 ) showed GET and CBT to have very limited benefit compared with the control group, and that these small differences may be accounted for by the absence of blinding, subjective outcome measures and consequent subject self-reporting bias. The CDC in the US has withdrawn CBT and GET as recommended treatments for people with ME from its website, and NICE will be completely revising the ME/CFS Guideline, October 2020 currently being the scheduled date of publication.

This EDM may help to generate greater governmental awareness of the issues that people with ME face, of its prevalence, and of the need for greater public awareness and understanding of ME. I would, therefore, be very grateful if you would support EDM 1247.

Finally, I have included some links in the event you would like to look at the issues a little more deeply:

1. HoC PACE Trial debate, Westminster Hall, 20.02.18 https://goo.gl/bJwtTV
2. 'TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study' pt 1/3 David Tuller DrPh 21.10.15 http://www.virology.ws/2015/10/21/trial-by-error-i/
3. Article on illness and death of ME patient Merryn Crofts: Manchester Evening News 01.04.18 https://goo.gl/H5Xto6
4. BBC Newsbeat documentary 08. 05.18 https://youtu.be/ XLPCuEdqIWY [Remove the space in the middle of the link for it to work properly]

Thank you for taking the time to read about this matter and in anticipation of your kind assistance."

 

Great letter @Sarah . YouTube links are automatically embedded on the forum, so I've used my admin powers to amend it slightly and add a note, so that it's easier for people to copy.

 

Thanks @Andy and many thanks for fixing that

 

54 MP's have now signed including my MP George Howarth (I only emailed him on Sunday so it's still worth trying)

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

 

The new signatures from yesterday.

 

How many MP signatures are needed for the debate to go ahead?

 

https://www.parliament.uk/about/how/business/edms/

And that's all they seem to say about it, at least that I can find. From that text it would be doing well to reach 100 and we are over halfway there, so lets aim for that?

 

I have in laws in the U.K but the thought of asking them to help nearly sends me into a crash....but I guess I should try, I might wait another while before I take it on....

 

I think that this is something that would be particularly worth contacting MPs about.

 

63 signatures, new ones below

 

Sorry to keep asking questions, is there a deadline for signatures?

 

As far as I'm aware no, but I would guess that, like most things, gaining as many signatures as quickly as possible is better.