Call to Action: Westminster Hall (UK) (parliamentary) debate: PACE trial and its effect on people with ME - Carol Monaghan February 20

I wrote this primer which I can send her. It summarises the flaws in the GET literature, but also includes a section (section 6) at the end about how it’s being misused here (as well as some patient quotes):
https://www.meaction.net/2018/02/09/post-exertional-malaise-get-in-me-cfs-a-guide-to-the-research/

I can also post in a couple of groups and encourage people to send their own emails.

 

Another bad result of the claimed 'success' of PACE trial were all the 'research' projects that followed;
Crawleys MAGENTA, SMILE and FITNET for starters. GETSET is another one, not to mention all of Chalders subsequent ventures. And that's only some of the more high profile ones in the UK.

Are there any figures on all trials on CBT and/or GET for ME/CFS that have been done on the back of the PACE trial?

 

Saw earlier on a more international ME FB site that they are selling T-shirts that say "SMILE FOR ME". NOOOOoooooo!
I will try and locate it later and let them know.
(I had just noticed it flicking thro posts on my mobile when out)

 

https://www.youtube.com/watch?v=fZY8jUuEzJQ

 

there is a charity called Smile for ME
https://www.smileforme.org.uk/

you can comment on their site here:
https://www.smileforme.org.uk/comments/

 

Yes, it is them. Hopefully their message is clearly enough not an endorsement for LP, to be a major problem.

 

I have posted this thread in the German Subforum. I will open an extra thread for it so that it is seen.

I have sent my own story to Carol Monaghan.

Besides that, I fear I don't have a good network. @Joh? You seem to be better connected.

@Nina @YaS @Philipp @Miri @mari_gold

Edit: @MSEsperanza

 

@ScottTriGuy

 

I just find it amazing that psychiatry, which relies solely on pontification, with zero objective proof required, can ever be considered to be the ultimate say in any issue.

Its especially mind boggling when the logic can go something like this:

The thing that happened could it some circumstances have adverse physical effects for some people but as we have declared that some people could be faking or just anxious about the issue or certain symptoms therefore the thing that happened has been objectively proven not to be causing real symptoms.

 

I agree. Also I think we should let her get through this PACE debate then start informing her about things like SMILE, FITNET and GETSET.

 

Yep, added it to my to-do list - will update here when I get it done.

 

I have not been able to read the whole thread yet but wanted to insert here advice from our MP. We have worked with him before and approached him to invite him to next week's debate but he is unable to be there although he did attend Unrest.

He has however expressed an interest in being involved and suggested a way forward which I find valuable in that it demonstrates how the Parliamentary process may be effectively used.

MP's advice to us about a Westminster Hall Debate
"The main purpose beyond airing an issue is for an MP - in longer adjournment debates, several MPs - to ask a Minister questions, and try to elicit answers, “on the record.”


And then to enable others to follow up.


So could I ask you to scrutinise this short debate when it is published in Hansard online the next day, and share your thoughts with me? I can take a look myself too, but you are rather more informed, so your advice would be helpful.


The key things to look for are:-

* issues that weren’t raised but should have been

* Ministerial answers that might be positive, which need to probed further, to push the Minister/Department further in a helpful way

* Ministerial answers that might be negative - and that need challenging eg if the Minister repeats things which are wrong or contestable from the evidence/research


Depending on the nature of the issue, I can decide whether it’s best to chase with an email or letter.


So, sorry again that I can’t be there, but very keen to work with others to maximise the benefit of the debate going forward."


This seems a positive way to approach the debate which we will attempt to follow up, as might anyone else who is interested via their own MP. It would also mean that the views of many of us expressed via our individual MPs (hopefully) may reach the Minister.

It would be good to see the Minister deluged by our so very pertinent questions from our MPs.


I am working from a place much below par, so my work may be slow.

 

Thanks Binkie. I was thinking that it's worth considering what sort of response the Department of Health might try/want to give to concerns about PACE.

 

Thanks, Trish. I’ve not posted the primer here yet, and I’m not really sure where it should go. Suggestions?

 

Maybe under Symptoms, post exertional malaise, fatigue and crashes

Or possibly under Living with ME/CFS, Lifestyle Management

 

I think I read that it would be someone from the Dept of Health that would be responding?

My understanding is that typically it would be someone who is pretty junior, and they would tend to give a fairly evasive, non-committal response, but it can vary. One reason this could be of interest is that it may give us some insight into whether the civil servant drafting the response has caught on to the fact that there are real problems with PACE, or if it will be more of the sort of Establishment defence of PACE that we were getting a few years ago.

 

Done.

Dear MP Carol Monaghan,

Greetings from Canada.

I understand from the global ME community that you are looking for health care experiences as a result of the (fraudulent) PACE trial.

No doubt others have supplied links to the research and data that debunks the 'treatment' put forth by the 'researchers'. No doubt you are aware of the long history of the medical institution psychologizing diseases they have yet to understand, especially if the illness mostly affects women as their 'wandering' uteruses, as physician's once thought, make them hysterical.

In Canada, despite being the creators of the Canadian Consensus Criteria for ME, our health policy advisers refer to NICE Guidelines for ME. As you know, NICE for ME is based on PACE.

This would explain why Canadians with ME - according to the government's own data - have the highest unmet health care needs, highest food insecurity, lowest income and least research funding of all chronic diseases.

The disdain Canadians with ME experience at the hands of physicians and politicians can be directly traced back to PACE. Ask a Canadian with ME about their experience with the health care system, and you will hear a story of trauma and iatrogenic harm - either physical (from contraindicated treatment) or psychological (from physician's denying physical symptoms, and denigrating the patient).

As Dr Nancy Klimas said (I'm paraphrasing): "They came to the doctor with ME. They left with PTSD."

Please do all you can so stop the harm, fund the research, and start the treatment.

Sincerely,