Patient Dreams

Trying not to get Darwined. #MECFS since 2000. Dreaming of one day becoming a patient and receiving appropriate medical care. #GreatestMEdicalScandal

[Patient Dreams @PatientDreams]

"Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population."
#DecodeME #MECFS 🧬

[DecodeME the ME/CFS Study @DecodeMEstudy]

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. Summary of our results: https://t.co/KFouvOq3sb Check out our full preprint paper: https://t.co/Df9m4jm0fE

[ME/CFS Science @mecfsskeptic]

1) 🔬🦠New article: we've made a comprehensive overview of the immune system in ME/CFS, analyzing major studies of the past 40 years.

A longread with separate chapters on:

- viral persistence
- cytokines
- neuroinflammation
- antibodies
- immune cells such as NK, B, and T cells

[Tom Kindlon @TomKindlon]

Open Letter to British Association for Clinicians in ME/CFS (BACME) in Response to the Document ‘Guide to Therapy’, 2025

https://t.co/N38sJa0HrG

Letter authors
Jonathan Edwards (professor of connective tissue)
Michelle Bull (physiotherapist)
Joan Crawford (psychologist)

#MEcfs

[Kerry Newnham @Squashedhedgi]

I think that the #me community needs a discussion about how we are still letting the term Chronic Fatigue syndrome anywhere Near this #mecfs.

[Patient Dreams @PatientDreams]

A Proposed Mechanism for ME/CFS Invoking Macrophage FcγRI and Interferon Gamma https://t.co/4hr1bmWF6p

#MECFS

[Tom Kindlon @TomKindlon]

The Science for ME forum has published its first factsheet which gives an introduction to ME/CFS. It was created following extensive discussion among forum members.

https://t.co/QuMvKkvAoW

Factsheets on other topics related to ME/CFS are in the pipeline.

#MEcfs #PwME

[Robert Saunders (aka McMullen) @RobertHMcMullen]

1. Prof Edwards: “When I first took an interest in ME/CFS I was horrified not only by the poor quality of methodology in studies but also by the vilification of critical patients by the academics producing studies that deserved that criticism.”

[Matt Lazell-Fairman @mfairma]

Please retweet pw#MECFS and #LongCovid

[NIH @NIH]

#NIH needs input to develop a Disability Research Strategic Plan. The plan will help advance disability research to improve health & well-being of people with disabilities. Listen in to the next in a series of discussions on 11/12 at 2 p.m. ET: https://t.co/FBfC8p7MAY

[NAACP @NAACP]

Attention, voters: Before you head to the polls today, here are a few things to remember:

✅ Check the ID requirements on your local board of elections website as some laws have changed.

✅ Verify your registration status before heading to the polls by visiting https://t.co/1DsuFiFHxy.

✅ If your registration isn’t up to date, you may still be able to vote. 22 states and D.C. offer same-day voter registration provisions.

#ElectionDay #NAACPVotes

[María Richardson @_diatoma]

If my math is correct, we are 4 dollars away from $750 for this fundraiser! Gracias with all my heart to all who've given ❤️.
Can we reach our goal & beyond?
@SaveLizNevra is at a crisis point & all donations help towards urgent care & ensured safety 💜
https://t.co/2QbZQFJqRg

[World ME Alliance @WorldMEAlliance]

Stock images often miss the harsh reality of life with #MECFS. The Deutsche Gesellschaft für ME/CFS offers a powerful photo series depicting the true burden of this illness.

Free for use, they accurately portray ME, helping to correct the narrative.

https://t.co/TsKiWofE5U

[Daniel Missailidis, PhD @DanMissailidis]

Very pleased to include our first bed-bound ME participants tomorrow in the first home visits of this particular study.

[#MEAction Network @MEActNet]

We are calling on the NIH Director to Fund the ME/CFS Research Roadmap to begin the work of finding solutions for the millions living with ME/CFS.

Please sign and share now!

US signers: https://t.co/nENmHlUJzh

International signers: https://t.co/36oGi3LMBU

#pwME #MECFS

[Robert Saunders (aka McMullen) @RobertHMcMullen]

"Worryingly, not only has the psychological medicine approach failed but its proponents have shown no recognition of their lack of understanding of either the illness or research methodology needed to identify effective treatment."

[Science for ME online forum @s4me_info]

A thread for nine #MECFS, #LongCovid, and related research papers from w/c 28th October 2024.

Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation.

1/10

[Science for ME online forum @s4me_info]

Out now, our News in Brief post for w/c 28th Oct. Providing headlines and links to further reading for #MECFS, #LongCovid, and related news, advocacy, and research.

Topics covered this week:
News, articles and advocacy
Coming events
& Research

https://t.co/5O7I2bTWKA

[Katiana. @katiamek]

Urgent need for help:

The situation is very dire. I'm really afraid

Is there any doctor, researcher or parent that is familiar with my situation and very severe me willing to have a video call with me and a local doctor? Or get in contact with the local doctor to discuss my conditions and why its urgent for him to very strictly speak to my parents and explain why:

I should ASAP be moved and have a fulltime carer

ME can get extremely severe

What PEM is

What kind of care a very severe patient needs

Ethics, support and empathy towards me/cfs and long covid patients

How patients are being mistreated globally

Basic aspects of comorbidities

That many patients have structural issues and need to travel abroad

There is no financial support from the government

I need an advocate with knowledge and if there is also experience, even better. I saw some very respected names have signed the letter to the hospital when I was involuntary hospitalised. Could someone please be my advocate and so can have a group call?

The doctor has studies in England, he has no knowledge but has basic empathy and will to help.

#mecfs #severeme #pwme #longcovid

[Robert Saunders (aka McMullen) @RobertHMcMullen]

Preprint article by Prof Jonathan Edwards on “The Concept of ME/CFS”: https://t.co/wsbXC8BzXB

Highlights the need for physician-led services, better care, more research and “some humility” from doctors.

Being discussed on S4ME forum: https://t.co/KUJqtoU1yc

1/

[ME/CFS Science @mecfsskeptic]

1) The results of the FITNET-NHS trial have just been published, the biggest randomized trial for children and adolescents with ME/CFS.

Here’s a brief overview of its main results.
https://t.co/gQpcc18cPI