Carol Monaghan has applied for a debate in UK House of Commons main chamber

https://twitter.com/user/status/1066001021904801793


Thanks to all those who've long researched and written about PACE - it's those many, many years of work by patients such as @Tom Kindlon and others who spotted the problems from the get-go, and the support of academics such as @dave30th David Tuller and @Jonathan Edwards that have got us to this long-awaited point.

 

We're so excited! Thanks to everyone who has contributed to the effort!

 

Wow!. Brilliant!

 

Excellent news.

Another letter to my MP to add to the list.

 

I hope the MPs are better prepared this time. They did well, but there are very specific problems in PACE that haven't been discussed in detail. It's well and good to say it is bad science, but it would be good to explain why it is bad science. The public is being being defrauded by unscrupulous scientists (or perhaps just being mislead by incompetent ones).There is no reason to believe that any therapies are effective when they haven't been tested in a properly designed RCT (which seem very rare in this area).

NICE is playing along, or perhaps it's just too dysfunctional. So are the journals. There needs to be some protection against this junk science or problems like PACE are going to continue to happen. This will be an act of standing up for the right of patients to receive effective treatments, regardless of the condition they have.

 

YES, excellent news!

I don't know if power point presentations, charts etc., are allowed in Parliament. I've never seen them used in the Canadian Parliament. But those unfamiliar with PACE, and the entire mess that is ME, may need visual aids to follow the bouncing ball. There are many, many facts, figures, and problems to learn about.

Presumably, some new to this debacle will review some of the points before the debate.

Thank you to Carol Monaghan and colleagues!

 

That is brilliant! Really really well done Carol Monaghan, and all those who inevitably are supporting her behind the scenes, and whose ongoing work have created an environment making this possible. A 3-hour debate in the HoC cannot be trivialised! Please take note BBC, when deciding whether to ignore it or not, or to misreport it! Fantastic!

 

Great news... hopefully that will give them time to cover some of the many problems we've faced. So many things I want to see get raised!!

 

If experts are allowed to testify can we persuade @dave30th to be one of those experts?

 

Progress on ME isn't just about PACE (not that anyone is saying it is). There are so many ways, in terms of research funding, stigma, support etc. that people with ME are disadvantaged. There are people that aren't diagnosed at all, or who aren't believed at all, or have no support from anyone at all, and discrediting PACE doesn't necessarily do very much to help them. There are also significant limits on how much you can achieve on changing scientific and medical opinion through politics. This is about something much bigger than PACE.

 

Any chance that S4ME could prepare a SHORT resume of the various scientific endeavours that are underway, that we could send to our MPs? Many of the other areas will be covered by the charities. We could focus on our strengths.

 

You are right about there being many other problems besides PACE.

However PACE does a lot to contribute to these other problems in my opinion. It appears to confirm the BPS approach and ideas, according to which patients aren't really ill, but merely deconditioned and in a state of mind where they see the symptoms of severe illness in ordinary physical sensations. This makes it much harder for patients to get help in many areas of life.

Why diagnose patients when doing so risks reinforcing "illness beliefs"? There is a logic to the current neglect.

 

PACE has contributed to all the problems with ME. If you look at the countries where recognition and support for people with ME is highest though, some of the countries with highest recognition of ME are also where PACE is especially strong. Recognition of ME is far lower in most of continental europe than in the UK, for example, despite PACE and the people behind PACE being far more influential in the UK. It just isn't as simple as the problem just being the BPS narrative, the problem is that nobody wants to take ME seriously at all, before PACE, after PACE, and with or without PACE.

 

Yes, @NelliePledge thanks. I assumed so. Hope those new to this issue understand the import of this whole situation.

 

When I mentioned PACE in my first post, I was mostly referring to the fact that it's PACE that has got us this debate - that's what seems to have got Carol Monaghan's attention and has been the focus of the two earlier event in Westminster. But I agree with the others on this thread that the issues of research funding, stigma, support, diagnosis, everything, are hugely influenced by the BPS model that PACE supports.

 

Great. As this is a rare opportunity and we agree theres lots of areas needing progress and MP intervention could help, I still think the APPG should resume. I also agree we need powerful informed advocates speaking beyond carol M, not repeat of the lines of “I had a constituent write and say they were concerns about PACE (extent of detail) , I’d like to tell her story and thank her local support group blabla”

APPG could be a space where all the concerned MPs who voiced at the last debate could come together discuss, be briefed and formalise a united strategy, rather than it being individuals. MS has an APPG, we had one uNTIL last year.
At the last debate, whilst excellent, there was often repeated points and anecdotal stories , imo we need to coordinate and use each minute of a major debate effectively to progress.

 

I agree there are many issues that need addressing, but given our current state of knowledge I would argue that the two most important are the prevention of harm by forcing NICE to drop GET and the PACE corruption of CBT and the need for increased funding for biomedical research.

The need for improved biomedical understanding and an agreed biomarker(s) are particular pressing if we are to prevent the very idea of the existence of ME being disappeared into the fantasy psychiatric diagnosis of MUS. This will leave us in much worse position than the current conflation of ME/CFS with the symptom of chronic fatigue.

I believe that we, in the UK, need to be impressing on our MPs two simple points, prevention of harm and more research into the biology of ME, by the time of the debate.

I agree with @obeat that a simple briefing document available send to our MPs might be very helpful.