Search results

Agree. Then we have well intentioned efforts to move forward but rarely with the weight of numbers. Petitions too narrow. Too many UK ME organisations (my husband comments a lot on this not being helpful). Where are these 265000 UK pwME? As @Samuel writes (if I understand correctly) this...

“Since 2018 the Government has committed over £53m to research on ME and Long COVID. Robust research and scientific evidence is pivotal in improving our understanding and treatment of both conditions. The statement makes it sound like they are doing a lot. Can someone breakdown the £53M? I can...

https://petition.parliament.uk/petitions/605679 Government response added (copied below) “Since 2018 the Government has committed over £53m to research on ME and Long COVID. Robust research and scientific evidence is pivotal in improving our understanding and treatment of both conditions...

For information part 2

Liverpool OT referred me, The Brain Charity is based in Liverpool so she’s aware of it’s existence. Essentially Liverpool only want to deliver a 3 part self management program. Reading above posts that’s the story across the country. Referring to the Brain Charity is simply moving pwME on. I...

Had my last phone appointment with Liverpool MECFS clinic. The situation for anyone in their large catchment: Liverpool only deals with mild-mild/mod. After quoting NICE to OT who was bewildered about a ‘care plan’ the manager takes me on and writes letter (no care plan) to my GP...

Dr John Campbell speaking about sequelae of LC particularly diabetes. Some interesting comments on post 1918 Spanish Flu and other historical events.

https://www.telegraph.co.uk/health-fitness/body/long-covid-devastating-illness-whiplash-work-shy/ Title changed in text but not link. Haven’t read due to paywall.

1993 at Uni EBV and PVF (suspect MECFS started then but activity not too limited) 2005 Chickpox as teacher, went PT but managed 5y. 2011 unknown virus that really reduced function( now fitted full criteria ME) but mild, PEM obvious in hindsight 2014 Diagnosed 2018 Relapse to severe following...

Too brain fogged to give detail. Re referred to Liverpool (CFS)/ME clinic. Main points: 1. Manager is an OT and seems understanding 2. Remit of clinic is only mild to moderate (told this by manager) 3. Therapy is online programme of 3 x1 hour sessions diet pacing etc 4. Over the phone they...

https://onlinelibrary.wiley.com/doi/10.1002/rmv.2315 Title Proposed subtypes of post-COVID-19 syndrome (or long-COVID) and their respective potential therapies. A narrative review of 43 papers dated 9 Dec 2021.

For information: Professor Pretorius webinar on hypercoagulation and apheresis. The main part that discusses Apheresis is from about 17mins. No results discussed from Germany but hoping this stimulates multicenter trials.

I was very fortunate that after a few rough days I gained a temporary improvement. I estimate about 25 points on the MEA scale. Only from my first Pfizer. Gradually returned to baseline over about 5months. Usual autumn decline set in. Managed to ‘walk in’ for booster on Saturday. I’m waiting...

@SNT Gatchaman Thank you I have found your thoughts helpful. This thread was here to follow up the microclot and vascular issues being seen in covid and long covid. It’s useful to have a real time record of this line of enquiry. Over time we can judge the science itself. Open and respectful...

@Jonathan Edwards The evidence I see is personal patient reports of recovery or improvement. Some well known MECFS researchers like Prof Scheibenbogen (in a solve talk on MECFS &LC discussed HELP apheresis as one of the possible treatment pathways) Dr Levine and Dr Proal are collaborating...

Private treatment costs money regardless, can understand why Long Haulers are queuing up and prepared to pay. Exploitation? Opportunism for private clinics? Researcher ambition? Patient enthusiasm/hype? Not sure where the line gets crossed but in a few weeks/months we will be better placed...

https://portlandpress.com/bioscirep/article/41/8/BSR20210611/229418/SARS-CoV-2-spike-protein-S1-induces-fibrin-ogen https://www.google.co.uk/amp/s/www.the-scientist.com/sponsored-article/trapped-inflammatory-molecules-contribute-to-long-covid-69391/amp The Scientist from 8 Nov (2nd link and...

Any thoughts on the list of collaborators? In @strategist link in above post.

The problem I have with MECFS is that nothing gets done because there’s supposedly not enough evidence to warrant it. The new guideline recommendations for research is telling. No biomedical just cost effective self management tools. All we can expect is clinic’s insisting we are to...

https://www.researchgate.net/publication/355982446_MECFS_FM_MITOCHONDRIAL_DYSFUNCTION_IN_DISEASES_PRESENTING_CHRONIC_FATIGUE_AND_BRAIN_FOG_IS_ASSOCIATED_WITH_CELLULAR_HYPOXIA_HYPOPERFUSION_ENDOTHELIAL_DYSFUNCTION_AND_PERSISTENT_CLOTS Preprint posted today Forum thread here:ME/CFS, FM...