Leeds ME Network

Patient self-help group sharing local and national ME/CFS information. See more our website and frequently updated Facebook page.

[Leeds ME Network @leedsMEnetwork]

Fans convinced Lana Del Rey's 'curse' on female singers is complete https://t.co/Njrlvwq3Fk via @MetroUK

[Channel 4 News @Channel4News]

"She didn't want to die. She had hopes and dreams and wanted to live."

Channel 4 News spoke to Sarah Boothby and Sean O'Neill, the parents to Maeve, who died in 2021 at the age of 27 after suffering with ME since her early teens.

Maeve's inquest began today in Exeter.

[Spoonseeker @spoonseeker]

If your condition allows, please do try to respond to this request for feedback on the service provided by the NHS for #pwME . Those in power need to be shown the extent to which it complies (or would ‘doesn’t comply’ be more pertinent?) with the new @NICEComms Guidelines. #MECFS

[ME Association @MEAssociation]

Today is International ME/CFS Awareness Day!

ME/CFS is a complex multisystem disease with a wide range of disabling symptoms.

Factsheet: What you need to know about ME/CFS is available to download for free via the link below:

https://t.co/SPiui0f6OS

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #MEAwareness #MEAwarenessDay #MEAwarenessWeek #MEAW2023

[Leeds ME Network @leedsMEnetwork]

@MEAssociation I have a collection of foreign and British commemorative stamps I have been wondering what to do with. Are you interested in those or just in more recent stamps?

[LongWaiter @LongWaitME]

@Dan_Wyke @CNN @amanpour @SutherlandPhD This one? https://t.co/yNtYNLd525

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

I can't remember a major news network doing such a long and thorough piece (unmuddied by biopsychosocial bullshit) on post-infectious chronic illness. Well done @CNN, @amanpour, @SutherlandPhD and Tara Ghormley. Covered just about everything. 🫶🙌 #LongCovid #POTS #MECFS

[Dr Asad Khan FRCP FRACP 🇵🇸🇳🇿🇱🇧🇮🇷🇮🇳#pwLC @doctorasadkhan]

This graph displays the symptoms commonly reported by the cohort, the number of patients suffering from each symptom & the % of patients in whom the individual symptoms resolved.

As you can see the results are encouraging 2/n

[Dr Asad Khan FRCP FRACP 🇵🇸🇳🇿🇱🇧🇮🇷🇮🇳#pwLC @doctorasadkhan]

On #LongCovidAwarenessDay many of us- including myself- have been sharing stories of loss.

@resiapretorius & I would like to offer the community some positivity & hope.

Here’s a sneak preview of our preprint about 91 #LongCovid patients treated with triple anticoagulation 1/n

[Dr Asad Khan FRCP FRACP 🇵🇸🇳🇿🇱🇧🇮🇷🇮🇳#pwLC @doctorasadkhan]

@Nibicah @resiapretorius Hyperactivated platelets and microclots have been detected in #MECFS as well.
I’m aware that some #ME patients have had similar treatment in Germany from @BeateJaegerMD

https://t.co/u77gK6rj9b

[Patient-Led Research Collaborative @patientled]

We hope the #LongCovid, #pwME, dysautonomia, and #NEISVoid communities are happy with these decisions, and look forward to sharing the research results as they come out! 11/

[Patient-Led Research Collaborative @patientled]

4th: Each project that doesn’t already have patient representatives on the project will receive 1-2 paid patient representatives from PLRC to inform study design. This will ensure that the lived experience of patients are incorporated in all steps of the research process. 10/

[Patient-Led Research Collaborative @patientled]

3rd: these projects showcase the many investigative paths that #LongCovid & ME/CFS patients would like to see pursued, including microclots, spinal-structural abnormalities, immunologic dysfunction, microbiome changes, sleep dysfunction, drug repurposing, and a clinical trial. 9/

[Patient-Led Research Collaborative @patientled]

2nd: #LongCovid research has fallen short of its promise to improve patient health & has largely disregarded decades of research into infection-associated illnesses. The awarded projects have an emphasis on impact & are well informed by existing research. 8/

[Patient-Led Research Collaborative @patientled]

including calling for specific areas of research in the RFP.

This is a change from the typical power dynamic of biomedical research, especially in chronic illness, where large organizations decide where funding should go, and patients have no input into what is studied. 7/

[Patient-Led Research Collaborative @patientled]

This fund and awarded projects are distinctly meaningful for four major reasons:

1st: A panel of 15 patient researchers with #LongCovid, ME/CFS, & dysautonomia decided how the $4.8m in research funding should be allocated https://t.co/GcWnbo2EU8 (the below + @ales_frost)

6/

[Patient-Led Research Collaborative @patientled]

8) A deep dive into multi-omic profiling of #LongCovid.

9) A clinical trial on Low Dose Naltrexone (LDN).

5/

[Patient-Led Research Collaborative @patientled]

6) A deep learning/computational modeling project to identify drugs to repurpose for #LongCovid.

7) A project on microclots, analyzing microclot burden in patients over time and looking at the impact of infection & vaccination on microclot levels.

4/

[Patient-Led Research Collaborative @patientled]

3) A grant to characterize non-restorative sleep in post-viral disease.

4) A project to look at the impact of surgery for stenosis on ME/CFS symptoms. #MESpine

5) A project to look at altered T cell responses in #LongCovid and ME/CFS, including T cell exhaustion.

3/

[Patient-Led Research Collaborative @patientled]

1) A project looking at microbial metabolites as disease-modifying factors in #LongCovid.

2) A project to unravel the pathophysiology of post-exertional malaise (PEM) in Long COVID and ME/CFS, including looking at blood and muscle biomarkers.

2/