[UK]Ask your MP to attend the APPG on ME meeting

[AndyPR]

So, I know Action for M.E. don't have the best rep here but I thought this call to action is a good idea.

ETA - the following charities are involved with the APPG; The 25% ME Group, Action for M.E, Association of Young People with M.E, Blue Ribbon Awareness for M.E., Invest in ME, ME Association, ME Research UK, The ME Trust, reMEmber and the Tymes Trust (Source https://www.actionforme.org.uk/uploads/pdfs/appg-officers-members-120516.pdf)

This week Action for M.E. has been contacting members of the All Party Parliamentary Group on M.E. to encourage them to attend its Annual General Meeting next week.

Taking place on Wednesday 7 September, 1.30pm to 3pm in Room S at Portcullis House.

Supported by APPG charity partners, including Action for M.E., parliamentarians will also discuss and agree recommendations for the APPG's ongoing inquiry into the provision of social care for M.E., and plan further work to undertake over the next 12 months.

We know that direct contact from constituents is the most effective way of encouraging MPs to take action. Might you be able to spare a few minutes to encourage your MP to attend the meeting?

You can:

• find out if your MP is already a member on our APPG page - though they don't have to be to attend, and all parliamentarians are welcome.
• contact them using our template email/letter - or send them to this story via Facebook or Twitter.

Thank you for your support.

https://www.actionforme.org.uk/news/will-your-mp-be-at-next-weeks-appg-on-me-meeting/ - though what I have quoted is all that is on that webpage.

A simple way to start contacting our MPs about M.E. - the more often we can do this, the more that it will register with them that it is an important issue.

Please don't hang around though, the meeting takes place Wednesday next week. Thanks all in advance.

ETA: Draft of the letter

Dear MP’s name

I am one of the 250,000 people in the UK living with the chronic, neurological condition myalgic encephalomyelitis (M.E.). M.E. is a widely misunderstood illness, and many of those affected experience considerable barriers in accessing healthcare, welfare benefits and social care.

You can personalise the letter by sharing your personal experience of M.E. here. We recommend keeping it to a single paragraph, as experience tells us that letters kept to one page in length are most effective.

Please would you attend the AGM of the All-Party Parliamentary Group (APPG) on M.E. on Wednesday 7 September, 1pm to 2.30pm in Room S at Portcullis House? Any time you can spare to attend would be much appreciated.

The agenda includes discussing and agreeing recommendations for the APPG's ongoing inquiry into the provision of social care for M.E., and planning further work to undertake over the next 12 months.

The secretariat for the APPG on M.E. can provide more details and answer any questions you might have, including about joining the APPG, which exists to improve the lives of people with M.E. Please contact the secretariat on policy@actionforme.org.uk or call on 0117 937 6623.

Yours sincerely

Your name

 

[AndyPR]

If you need to find out who your MP is and what their contact details are, you can use this link http://www.parliament.uk/mps-lords-and-offices/mps/

 

[John Mac]

If you're contacting your MP this might be a good time to also mention the antics over the PACE study and the recent findings by Dr Naviaux of a chemical signature in the blood.

 

[slysaint]

As mentioned on another thread I recently contacted Nicola Blackwood (who I've just seen is on the APPG list) not because she is my MP(she isn't) but because of her position in the DOH and also because of what I read about her.

Am I right in thinking that anyone who is already on the APPG should be aware of the current issues re PACE and the recent Naviaux research?

 

[John Mac]

Just sent this email to George Howarth my MP

Hello Mr Howarth
I am contacting you as my MP to ask if you would attend the All Party Parliamentary Group on M.E. meeting on Wednesday 7th September, 1-30pm to 3pm in Room S at Portcullis House.
M.E. (Myalgic Encephalomyelitis) is a misunderstood but serious disease that affects about 250,000 people in the UK and about 17 million worldwide.
Not only have we as a patient group been abandoned by the health system but they have appointed a group of psychiatrists to invent a ridiculous theory about our illness so that our pleas of help can be ignored.
These psychiatrists are currently fighting a FOI request to release the data from their study (The PACE study) so that independent academics can verify their claims. They clearly have something to hide as they have been fighting this FOI request for 3 years now and have admitted to having spent £240,000 on the Tribunal hearing in legal fees. They lost the Tribunal hearing in which the judge described their evidence to the Tribunal as “grossly exaggerated” and "wildly speculative".
Just this week Dr Robert Naviaux has published his study showing that people with M.E. have a unique chemical signature in our blood pointing to a system wide problem with our metabolism.
We are now at an important crossroads with our illness, one in which we can leave behind the bizarre theories of self interested psychiatrists and push on with the ever growing body of evidence pointing to a biological basis to our illness.
Please would you consider attending this meeting.

 

[AndyPR]

As mentioned on another thread I recently contacted Nicola Blackwood (who I've just seen is on the APPG list) not because she is my MP(she isn't) but because of her position in the DOH and also because of what I read about her.

Am I right in thinking that anyone who is already on the APPG should be aware of the current issues re PACE and the recent Naviaux research?

I'm afraid I have no additional knowledge about the situation other than what I have posted, perhaps @charles shepherd could help us with what the MPs on the APPG might or might not be aware of?

My personal opinion is that the majority will know nothing other than what they learn at each meeting, but then I have a cynical view of politicians already, so I may be doing them a disservice.

 

[Cheesus]

I was surprised to see Jacob Rees-Mogg as one of the officers. I didn't imagine it would be his cup of tea! Still, let's hope he treats us with kindness.

My mum is a local party member and knows our MP. I will ask her to email her.

 

[AndyPR]

I've just edited the original post to include a copy of the draft letter as copying and pasting AfME's version (a PDF for the techs out there) caused funny formatting to occur in my attempts to email it.

Also, don't forget to encourage any family members or friends to take this action as well (if you know anybody who will help out obviously).

 

[JaimeS]

Feel free to quote anything I have said, or produce the article to send in its entirety with attribution.

 

[charles shepherd]

The MEA and AfME form the joint Secretariat to the APPG on ME at Westminster.

We also split the costs of funding this group for MPs and members of the House of Lords who take in interest in ME/CFS.

The main work topic for the group at the moment involves problems faced by people with more severe ME/CFS accessing social care.

As a follow up to this I have been giving training sessions to social care staff - the most recent being to Camden Social Services in June. There is a report on this meeting in the August issue of ME Essential magazine.

Dr Charles Shepherd - Hon Medical Adviser, MEA

Like · Reply · 2 · 2 hrs

 

[AndyPR]

When I sent my email, in my personalised paragraph I decided to focus on how ME has impacted on me and, especially as my local MP is a Conservative, the emphasis was on my previous career and the downward trajectory that ME took it on - therefore, hopefully, giving him a nice neat 'used to earn the system lots of money by working, now a drain on the system by not working' narrative.

As I plan to email him again nearer to the Millions Missing protests at the end of this month I will probably use the new biomedical research and the Tribunal smiting PACE then.

 

[Action for M.E.]

Huge thanks @AndyPR for posting on here - and huge apologies from us that we gave the wrong start time for the meeting in the story and template letter.

The correct start time is 1pm, and the meeting will finish at 2.30pm. We have amended this now in our story and in the template letter too.

EDIT: Have updated this to include correct finish time.

 

[AndyPR]

Huge thanks @AndyPR for posting on here - and huge apologies from us that we gave the wrong start time for the meeting in the story and template letter.

The correct start time is 1pm, and the meeting will finish at 3pm. We have amended this now in our story and in the template letter too.

Hi, your new version of the template letter now states it's 1.00 to 2.30pm, please confirm the correct finish time.

 

[Action for M.E.]

Hi, your new version of the template letter now states it's 1.00 to 2.30pm, please confirm the correct finish time.

The meeting is 90 minutes long and finishes at 2pm - I've amended our post above. Thank you @AndyPR

 

[Yogi]

I am always reluctant to ask my MP to do anything unless I know that it will be positive for people with ME and not harmful and undermine our cause for research and treatment into ME. Given AFME are organising this and publicising this I have serious doubts about this. I am sure there are many other people with this view given AFME's history with supporting the psychosocial stance on ME as noted by the first post.

Given @Action for M.E. are here I am sure we will all be grateful if they could respond to these important questions.

1. What is @Action for M.E.'s position on the PACE trial. AFME supported it at inception and the PACE Principal Investigator's have continued to use your charity's support of the PACE trial as a proxy for majority patient support of the trial. Over the last year AFME's position is very unclear on it. Do you still support it or not?
2. (a) Why has @Action for M.E. funded Esther Crawley's Paediatric Prevalance study?
(b) What is the identity of the "private corporate donor" and why were they not named and why did they give money to AFME to pass through to Bristol University rather than paying the money directly?
(c) Please can you confirm that you have responded to @ronddejambe's post below?

http://forums.phoenixrising.me/inde...evalence-study-funded-by-action-for-me.44622/

I hope AFME will want to be transparent and answer some of these questions that ME patients have.

Thank you for your assistance and we look forward to your response.

 

[John Mac]

The meeting is 90 minutes long and finishes at 2pm - I've amended our post above. Thank you @AndyPR

If the meeting is 90 minutes long and finishes at 2pm then the start time would be 12-30 not 1pm.
Can you please confirm the start and finish time please.

 

[charles shepherd]

Parliamentary information on the APPG on ME:

http://www.publications.parliament.uk/pa/cm/cmallparty/register/myalgic-encephalomyelitis-me.htm

If the meeting is 90 minutes long and finishes at 2pm then the start time would be 12-30 not 1pm.
Can you please confirm the start and finish time please.

The APPG on ME Agenda that has gone to MPs - which is sitting here in the paper pile on my desk right now! - says 1pm to 2.30pm

CS

 

[AndyPR]

If the meeting is 90 minutes long and finishes at 2pm then the start time would be 12-30 not 1pm.
Can you please confirm the start and finish time please.

Details are tricky I guess.....

I am always reluctant to ask my MP to do anything unless I know that it will be positive for people with ME and not harmful and undermine our cause for research and treatment into ME. Given AFME are organising this and publicising this I have serious doubts about this. I am sure there are many other people with this view given AFME's history with supporting the psychosocial stance on ME as noted by the first post.

While I understand that quite a number of people will have issues with AfMEs involvement, I'd just like to highlight again that they are NOT the only ME charity involved in this. I did a quick search and this is the most up-to-date report on an APPG for ME meeting - http://www.meassociation.org.uk/201...-from-meeting-held-on-thursday-17-march-2016/

PRESENT
Parliamentarians
Sir Peter Bottomley MP
Peter Aldous MP
Representative from Mark Tammi MP
Representative from Siobhan McDonagh MP

Secretariat
Declan Mullaney, Action for M.E./Whitehouse Consultancy
Dr Charles Shepherd, ME Association

Organisations
Mary-Jane Willows, Association of Young People with M.E.
Janice Kent, reMEmber
Bill Kent, reMEmber
Jane Colby, Tymes Trust
Catherine Ross, The 25% ME Group
Hannah Clifton, ME Trust

APOLOGIES
Parliamentarians
Mark Tami MP
Countess of Mar
Jacob Rees-Mogg MP
(and a host of other MPs - my shortening of the list)

Secretariat and organisations
Sonya Chowdhury, Action for M.E.
Sue Waddle, ME Research UK
Kathleen McCall, Invest in ME
Christine Harrison, BRAME

So my take on the attendance is
1. if AfME can run what might be considered by some an 'anti-ME patient' agenda with all those other charities there then we have to be asking questions of those other charities and
2. A grand total of two whole MPs turned up! It is for that reason that I want MPs asked, politely but firmly, that they attend so that they can be educated, not just by AfME but also by Dr Shepherd and the representatives of the other charities. If we want to be better represented in Parliament then the people who represent us there need more knowledge so they can make better decisions. (And yes, I'm choosing to ignore AYME are there as they are outnumbered, so hopefully common sense would prevail).

I totally get wanting answers from AfME, I think they could do a much better job in representing PwME to the wider world, but to not take action on this until we get all the answers that everybody wants is a waste of time, all IMHO.

 

[Snowdrop]

1. if AfME can run what might be considered by some an 'anti-ME patient' agenda with all those other charities there then we have to be asking questions of those other charities

For me, this does not in any way indicate an implicit answer to the very pertinent Q's asked by Yogi.

If AfME are on side as might be suggested by involvement together with other charities then there should be little problem making a clear and concise statement with no vague prevaricating proving as much to patients--given some of their historical connection to PACE and in particular the ongoing EC paediatric study.

 

[AndyPR]

For me, this does not in any way indicate an implicit answer to the very pertinent Q's asked by Yogi.

If AfME are on side as might be suggested by involvement together with other charities then there should be little problem making a clear and concise statement with no vague prevaricating proving as much to patients--given some of their historical connection to PACE and in particular the ongoing EC paediatric study.

And I'm not suggesting that there is such an answer being made, nor am I trying to suggest that AfME are necessarily 'on side' just because they are operating alongside other charities.

All I want to do is to encourage PwME in the UK to contact their MPs about ME in a more focused way than probably has been done previously.

I'm trying to provide an argument with a wider view than the one Yogi seems to be suggesting, which seems to be along the lines of "AfME are involved in this, they are bad, therefore don't contact MPs and don't encourage them to this where they might learn more of ME". My argument is "sure, AfME, who may have held or do hold views and positions that we disagree with, may be involved but so are all these other organisations that, as far as I can tell, are held in far greater esteem in the patient community, and therefore I think it's still worth getting MPs to this meeting where they can be educated".

Ultimately, if people don't trust the other charities to represent patients in the way that we would want, and that would include not trusting Dr Shepherd, then don't contact your MP. For those who do have trust in them, as I do, then contact your MP, as I have.