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

I used @Lou B Lou 's link in post #113 and got straight through to the article and comments.

After a conversation, I think Mr B took up a free subscription offer and logged me into it which is probably why I can access the comments. I think it was a free month offer.

Not sure that copyright will allow me to copy much ( there are 129 responses so far) but I"ll send Nina's

Nina Muirhead
STAFF
5 HOURS AGO
Sajid Javid has done the right thing. As has Sean O'Neill. The human story is what is needed to get the compassion of the nation behind researching and understanding ME. Most doctors are blind to the harm they are doing by underestimating this disease. The psychosocial explanation for ME was a fad that has ruined lives, we cannot loose another generation to medical ignorance and neglect. A top down mandatory education and culture change is starting right here.
Recommended 18

G
Guibbers
16 HOURS AGO
My wife has suffered with ME for over 40 years. Most GPs have been extremely unhelpful and very misogynistic (including female GPs) seeing it as ‘all in the mind’. I applaud this renewed focus and hope others will benefit.
Recommended 85 - most recommended response

 

Another popular one - responses still coming, now 139
Taliya
11 HOURS AGO
The Epsteein Barr virus and Glandular fever are big culprits. The medical profession still have little understanding of what triggers problems with the immune system or what causes autoimmune diseases. The medical profession should be ashamed of the way they have treated people with ME/CFS. New research regarding whether certain genes could be causing this is underway but could take years. - Recommended 30


In response to a comment about Sajiv Javid only doing something about it when a relative was affected
Sean O'Neill
STAFF
1 HOUR AGO
his relative has had ME for six years - the point is he is now in a position where he can finally have some real influence over an issue he realises is a much wider problem; lots of other MPs from across the parties were at the report launch yesterday, encoruaged to attend by their constituents

 

Uhh, didn't bookmark them and my memory isn't good at finding things back.

What I remember is a tweet from Sean O'neill, I think one from the Times and Javid also tweeted one, I think it's included in this thread or another. Also at least one from the MEAssociation.

And of course other pwME who tweeted it, the comments are all mostly the same mix of appreciation for radical change and skepticism that it will not be stopped behind the scenes.

 

Times article
Comments at 183
Suggestions that research should be into cancer instead are there but seem to be very brief by one person .


Liz22
17 HOURS AGO
He is going to use funds to “further the interests” of a quarter of a million people in the UK who until now have had the dreadful experience of suffering a debilitating illness which has no defined treatment. My 40 year old daughter has been almost bedridden for 28 years. We have been left to cope with little help from the medical profession. I very much hope this new research will find some answers and will help many people.
Recommended 48

Charles Shepherd
2 HOURS AGO
The longstanding culture of denial, ignorance and neglect about ME has to end. Publication of the APPG report and the timely intervention by Sajid Javid cannot be ignored. We need ring fenced government funding for biomedical research into the cause and treatment of ME that is on a par with other neuroimmune diseases, rapid and effective implementation of the recommendations in the new NICE guideline on ME/CFS throughout the UK, and medical education/training on diagnosis and management for all health professionals. Dr Charles Shepherd, ME Association
Recommended 5

 

Times article responses 219, mostly supportive

 

More MPs, or their staff memebers would have been there, if another report had not been issued on the same day!

 

Do you know if it is possible to know which MPs attended? PwME being able to thank their MP if they did attend could be useful in building a positive relationship with them.

 

https://twitter.com/user/status/1530124388728819712

 

AfME should know as they were providing name badges etc. I'll ask them next week.

 

Video from the report launch. Compiled from mobile phone footage, so picture is a bit wobbly and audio is, while not terrible, not the best.

"The All-Party Parliamentary Group (APPG) on ME met at 3pm on Wednesday 25 May to launch their first report, Rethinking ME. MPs from across the party political divide attended, as well as people with ME, charity representatives and others.

This video has been put together to provide insights into the speeches delivered by Sonya Chowdhury, Chief Executive Action for M.E., and Carol Monaghan MP, Chair of the APPG on ME. Along with a keynote speaker. The Secretary of State for Health and Social Care Sajid Javid."

 

Side note: why would one keep IAPT alive? As a genuine question - and this will cover probably the different areas it now does inc mental health only and then increasing long-term condition (if they do anything much different given the note of it not having 'physical' or anything in there) - does it have any worth compared to what it has taken money from, or could be in its place?

Its very lowest common denominator

 

It should be possible to get an idea of most MPs who attended, in a couple of weeks when Carol M's assistant returns from leave. However there were several MP assistants there, who apparently do not sign in, but just drift in and out. Also because it clashed with questions on partygate, some may have come late or missed it altogether.

 

Agree, Javid's announcements are encouraging indeed.

Apologies if I missed it, but I just think it's a pity that S4ME doesn't seem to be on the list of organizations/ people that could be involved in advising on Javid's action plan in general, and also on suggestions whom to invite to the panel.

"He will convene a panel next month with researchers from around the world in an effort to encourage new treatments."

It's probably implicit that before there's research into treatments, it would be helpful to get some more helpful clues about the possible pathopyhsiology.

It seems to me though that research into the pathopyhsiology needs to be made a more explicit priority.

The Rituximub study was justified I think because some probable puzzle pieces from ME epidemiology and research into pathophysiology combined with anecdotal cases of improvement in cancer patients co-morbid with ME did add up to a testable hypotheses how it could work? It seems to me the results were also helpful as negative evidence that some of those probable puzzle pieces don't fit into the picture.

But is there currently any treatment where there are equally promising puzzle pieces as there were for Rituximab?

 

@MSEsperanza wrote: "But is there currently any treatment where there are equally promising puzzle pieces as there were for Rituximab?"


Ampligen? (Rintatolimod).

Apparent review of Ampligen studies on ME (called Chronic Fatigue Syndrome). A number of studies examined.

2016.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4917909/

Unlike Rituximab, Serious Adverse Effects seem to be very low for Ampligen in 'CFS' studies. I have only scanned these pages so far, it's very long.




19 May 2022
'AIM ImmunoTech provides Phase III efficacy update on Ampligen for long Covid'
Treatment with investigational drug Ampligen for a minimum of 12 weeks offered a decline in fatigue in long Covid patients.

https://www.clinicaltrialsarena.com/news/aim-immunotech-ampligen-covid/

 

Rintatolimod (Ampligen) - a cure in search of a disease.

Wikipedia article is comprehensive https://en.wikipedia.org/wiki/Rintatolimod

 

We have a few threads on Ampligen but this is the main one, Ampligen - Hemispherx Biopharma re ME/CFS. Unless I have missed something there is nothing to suggest it has the promise that rituximab seemed to have.