Cambridge ME group

CBME is a support group based in #Cambridge UK for people with #MECFS, #MyalgicE , #CFS, #PostViralFatigue, #Fibromyalgia, including #pwME caused by #LongCovid

[Cambridge ME group @CBMEgroup]

George Monbiot laying out for all to see the horrific history of deliberate #MECFS denial by the Science Media Centre

[George Monbiot @GeorgeMonbiot]

This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. https://t.co/qVjkbiGQY3

[Cambridge ME group @CBMEgroup]

Hi everyone, hope you’re doing well. I’m reaching out to ask for support for this GoFundMe. This cause is important and whether you can donate or simply share the fundraiser, every little bit helps and is greatly appreciated. Here’s the link:

https://t.co/rNMAdKp2JK

[Cambridge ME group @CBMEgroup]

@CaroleBruce17 @KatyBruce108 Happy birthday Katy!

[Remembering Srebrenica @SrebrenicaUK]

Remembering Srebrenica UK's statement on the funeral of Ratko Mladić - 1/4

[Long Covid Advocacy 💙 @LongCovidAdvoc]

Our statement in response to The Telegraph article:
'How having a disability became cool' Young women, named 'sickfluencers', are turning chronic illness into a lifestyle trend & entrenching a culture of economic inactivity.' by Poppy Coburn

[Cambridge ME group @CBMEgroup]

@WheelieFUMS @DanielZeichner I have signed. Please support this petition.

[Katy B @KatyBruce108]

"Prof Wessely commented “That was a powerful and uncomfortable paper” before continuing that “There will undoubtedly be many people, including, for example, those who one might call ‘CFS activists’, who would have loved every word you were saying.”

[Cambridge ME group @CBMEgroup]

@DrMichaelScoma Daridorexant seems to help - I can get several hours’ unbroken sleep. Any comment?

[Cambridge ME group @CBMEgroup]

We appreciate their courtesy in responding at presidential level. But they have answered none of the specific points we raised.
Read our letter and the RCPsych response here:
https://t.co/oUCZJWdYhJ

[Cambridge ME group @CBMEgroup]

The Royal College of Psychiatrists responded to our letter pointing out that the biopsychosocial emperor had no clothes and asking them to stop trying to cover up its nakedness.

[Resia Pretorius @resiapretorius]

To my X followers, including the fake and catfish accounts:

For some time I have been the target of sustained personal harassment on this platform, much of it from anonymous and impersonating accounts. I have stayed quiet and kept working. I am addressing it now, once, and then returning to the science.

I am not the only one. A number of researchers working on the biological basis of this illness, including collaborators of mine, have faced the same pattern of harassment. Much of it appears coordinated and comes from a small number of accounts whose interest is clearly not the science: their aim is not scientific debate; it is to intimidate people for doing research they do not like.

Targeting scientists for studying a disease is not scepticism; it is intimidation.

On the facts: the claim that our work "has not been replicated" is untrue. Independent groups have confirmed or applied these findings:

- the same aggregates were confirmed in pulmonary embolism (Baker et al., Communications Medicine, 2023);

- amyloid-fibrinogen aggregates predicted disseminated intravascular coagulation and mortality in sepsis (Schofield/Toh et al., Blood Advances, 2024);

-increased fibrinaloid microclots were found in Long COVID by an independent UK group (Dalton et al., Sheffield Hallam, preprint, 2024);

- and the methods have been taken up in paediatric Long COVID (Steifman, Yonker et al., Pediatric Research, 2026).

This is now a field with dozens of independent papers.

One thing to make very clear: I have no involvement in any apheresis or plasmapheresis treatment for these conditions. Why? It is simply not my field of expertise. I cannot control how others use published methods, and it is wrong to attribute their choices to me.

On Biocode, our start-up company: public universities have a clear responsibility to translate research into public benefit, and commercialising discoveries through spin-out companies is a core part of that mandate. That is precisely what Biocode was created to do. It is an early-stage university spin-out, it is not profitable, and repeated insinuations that I am personally enriching myself are false.

I welcome robust scientific criticism; that is how science works, and II have actively reached out to colleagues who see the field differently.

Harassment, account stalking, impersonation and personal attacks are not criticism. I am documenting it, I am taking advice on my options, and I will not be engaging with it further.

Just because biological researchers are targeted in this way does not mean we will stop. If anything, it strengthens our resolve to understand diseases and to serve the millions of patients who are waiting for answers.

[Cambridge ME group @CBMEgroup]

Read it here: https://t.co/bPwOvDJWud

[Cambridge ME group @CBMEgroup]

ME support groups have written an open letter to @rcpsych challenging its defence of last month's Congress session on ME and Long Covid. A general "biopsychosocial" framework cannot rescue specific treatments the evidence has already rejected.

[Elisabeth Klaar @lammas_leaves]

And for further info - here's the ME Association statement that they posted online and on social media accounts yesterday morning.

https://t.co/iazMTL13Xj

[Elisabeth Klaar @lammas_leaves]

Further information and background can be found at this website:
https://t.co/i0vQqZT5im

[Elisabeth Klaar @lammas_leaves]

our call for change. We look forward to seeing as many of you as possible at the online AGM.

We are grateful for your input and understand how much energy this will have taken.

Elisabeth Klaar & Nicky Proctor

[Elisabeth Klaar @lammas_leaves]

of the MEA has required a lot of energy. We have asked advice from the MEA and been guided by their responses on matters regarding deadlines and the format of our motion.

We appreciate the support of the ME community who have responded on social media, via email, and by phone to

[Elisabeth Klaar @lammas_leaves]

we hope the MEA makes collaborating more straightforward in future. The ME Association still has to demonstrate to us that it can make reasonable adjustments in its communications with the community it serves.

Drafting this motion and engaging in discussion with representatives

[Elisabeth Klaar @lammas_leaves]

for the 2024 AGM.

We have been in communication with Mr Riley and other trustees since submitting our motion.

There have been times when emails to us have not been clear or straightforward. The next phase will necessitate the involvement of larger numbers of people with ME and

[Elisabeth Klaar @lammas_leaves]

ME Association @MEAssociation AGM
#pwME #MECFS

@NickyProctor and I are sharing a public statement about the ME Association AGM.

https://t.co/ka9xCROuOg

Nicky and I are pleased to see the ME Association has issued this public statement in response to our proposed motion 🧵

[Peter W 🇺🇦 @mediumwhite]

The best thing we can do to drive change for people with ME and LongCovid is to findraise for change.

Having spent time to understand the organisations, I am donating to @actionforme and @MEResearchUK.

If you or your family can support, please do.

https://t.co/X6knzVkgdG