Paul Keeble ME/LC
ME since 2017 (Mild), 2019 Moderate , 2020 Severe
Long Covid since March 2020 (V Severe)
Funcap55 = 1.9 ( (Severe)
- "Through sharing experiences, symptoms, scientific information and treatment options, forum users contribute to knowledge production processes that change the definition of LC as a diagnosis" pubmed.ncbi.nlm.nih.gov/40293208/
- #longcovid patients showed -clear signs of T cell hyper-activation predominantly in the CD8+ T cell subset - 4-fold higher expression of CD25 - 2-fold more effector-memory T cells - 7-fold higher release of IL-3 - 5-fold more IL-3-expressing CD8+ pubmed.ncbi.nlm.nih.gov/40287027/
- 1. [ME/CFS] was redefined in the 1990s by a group of doctors to be about severe fatigue. 2. Their own studies show CBT and GET do not lead to improvement. 3. The GET manual does include fixed incremental increases in exertion. Sunlight on what they did! pubmed.ncbi.nlm.nih.gov/40283139/
- "Persistent immune disturbances in individuals with PCS [#longcovid] are characterized by reduced SARS-CoV-2-specific T cell responses, increased B cell activation, and altered inflammatory and vascular biomarkers." pubmed.ncbi.nlm.nih.gov/40279368/
- European study watching people to develop ME/CFS. 5% of those watched developed mono, 34% didn't recover after six months. Of those 68% met ME/CFS definition (so about 1.16% of everyone). Those that developed ME had lower interleukins (5 and 3) before. www.meresearch.org.uk/why-might-ep...
- The Scottish parliament marks international ME day. "(ME/ CFS), which affects at least 20,000 people in Scotland, is often misunderstood, mis-diagnosed and under-diagnosed, and is grievously under-researched" www.meresearch.org.uk/scottish-par...
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- In health care workers, who are much better placed to know that their symptoms aren't normal or something else the meta study from today showed 40% prevalence. A lot more people have this than know it.
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- Welcome to the club of at least 400 million world wide in it all of which would very much like to leave! Its a truly dreadful disease even its mild form.
- Mid size study out of Egypt on people infected with Covid found 83.5% of them had at least one lasting symptom six months later. Most common were fatigue, myalgia and dyspnea, hospitalised patients twice as likely to have symptoms. pubmed.ncbi.nlm.nih.gov/40217997/
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- It's a waste of time to explain it, they won't believe you anyway and they are thousands of papers out of date and they won't read a single line let alone thousands of pages to catch up.
- How to hide a pandemic 1. Green-mapping - Redefining terms 2. Calm-mongering - Downplaying the harms 3. DARVO- Freedom! 4. Myth-making 5. False framing - Bad assumptions and Dilemmas 6. Othering - "Vulnerable" 7. Data Manipulation - Slow down testing howtohideapandemic.substack.com/p/how-to-hid...
- Jared Younger on why most people get rejected from clinical trials. At various sizes only a small percentage get accepted - Small 5% - Medium 10% - Large 30% This is to reduce variability (drugs,other conditions) and improve the chance of significance. www.youtube.com/watch?v=1w51...
- On RFK "It’s been a dark time, very disheartening and devastating...while no administration has given the necessary resources to tackle Long COVID or any infection-associated chronic condition, the attacks that are happening now will set us back" thesicktimes.org/2025/04/07/l...
- "The baricitinib trial, I’m really excited about, [and] Dr. Putrino and Iwasaki and Proal’s rapamycin trial. I’m looking forward to still seeing how RECOVER-TLC ends up and what they choose."
- "Our findings show that older women who assessed their health as poor had a higher risk of dying early than those who rated their health as good," A "well duh" finding but not in medicine, medicine ignores what the patient says and prefers its tests. www.sciencenorway.no/cancer/if-pa...
- MEA's Count ME study of 10458 diagnosed ME/CFS and Long Covid patients. 78.2% of ME patients had PEM, 88.2% fatigue and sleep issues. Similar in Long Covid. "22.1% diagnosed within 1–2 years of symptom onset and 12.9% taking more than 10 years"🧵 bmjopen.bmj.com/content/15/4...
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View full thread"Many respondents (1255, 43.40%) had not seen a specialist in 5 years or longer" "A very small percentage of respondents stated that they had not been seen (78, 2.70%)"
- "half of the diagnosed patients (3026, 47.6%) were seen in a hospital-based ME/CFS specialist service. NHS GPs saw most diagnosed (4758, 74.9%) and undiagnosed (177, 63.0%) patients."
- "Of the participants with ME/CFS or long COVID, a subset (n=791) reported both conditions." "83.4% (6053) of these respondents were female, 14.9% (1077) were male and 1.8% (129) were non-binary or preferred to self-describe."
- NHS experience after being diagnosed with ME/CFS, 33.76% described their experience as very poor, poor and mixed experiences were also commonly reported, with 18.39% and 25.52%. Only 5.29% reported good experiences , excellent 1.39% or did not know 0.53%.
- "Only 10.1% of participants reported a positive impact on care, and satisfaction with NHS services remained low (6.9% for ME/CFS and 14.4% for long COVID)."
- A lot of people harmed by treatments and refusal of treatment. The harm biases towards women, financially deprivation and the long term ill and they were more harmed. The discussion about this on the reddit NHS shows this wont be accepted🧵 pubmed.ncbi.nlm.nih.gov/40174977/
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View full thread"9.7% participants reported harm caused by the National Health Service (NHS) in the last 3 years through treatment or care (6.2%) or the lack of access to care (3.5%)"
- "People with long-term illness or disability, those in lower social grades, and people in other disadvantaged groups reported higher rates and more severe impact of harm."
- "People ‘feel’ a lot of things that aren’t necessarily entirely true" "The chronic condition is causing the harm. Not the NHS." www.reddit.com/r/nhs/commen...
- "Two-thirds of those making a complaint felt it was not handled well and approximately half were satisfied with PALS."
- "SARS-CoV-2 infection indirectly leads to profound and post-acute COVID-19 alterations in the stomach at the cellular and molecular levels, resulting in adverse outcomes following co-infection with SARS-CoV-2 and H. pylori." pubmed.ncbi.nlm.nih.gov/40157534/
- A tiny little local newspaper vastly outperforms the big guys by describing ME/CFS including a lot of the optional symptoms and just informs people without any spin. Its probably one of the best straight forward "disease you don't know about" articles. www.getsurrey.co.uk/news/health/...
- "the mean time to obtaining a lupus diagnosis was reported to be almost seven years. Three out of four respondents said they had received at least one misdiagnosis along the way" Huge long term impacts of Psychosomatic misdiagnosis found. virology.ws/2025/03/31/t...
- "Paying for reviews moderately improved both the number of accepted invitations and the speed at which reviews were carried out." "Journal editors assessed reviews from paid and unpaid reviewers and found no difference in quality." www.nature.com/articles/d41...
- "Practitioners at the event providing Long Covid services verbalised they have been facing loss of direct NHS funding, and having to bid for funding from their Integrated Care Board. This has included merging with ME/CFS services in some instances." meassociation.org.uk/2025/03/the-...
- A "map" created by NIHR of 639 studies of ME/CFS from January 2018 to May 2023. Concerningly only 11% of studies included people with postexertional malaise. The map of types of studies (7) and goals is quite interesting as is the bias chart (9). meassociation.org.uk/2025/03/nihr...
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- Goes to show they are still a substantial part of the "research" in ME/CFS and that biological research has barely begun even from 2018 onwards. I tend to ignore all the pyschology and exercise nonsense but I see them more often than the biology papers.
- "ME/CFS patients, compared to controls, have a significantly higher load of EBV. IFN-I autoAbs cannot explain IFN-I dysfunction" IFN-I dysfunction could be due to viral evasion and degradation of IFN-I receptors needs to be studied. pubmed.ncbi.nlm.nih.gov/40143349/
- 30 person Hungarian MRI study looking at Post COVID infection headache sufferers. "Persistent post-COVID-19 headaches may be linked to structural white matter changes observed in MRI." www.mdpi.com/2035-8377/17...
- "“I understand there is this enthusiasm to support chronic disease. Well, long COVID is the exemplar of chronic disease,” Al-Aly says. “I would like to remind RFK, Jr. that he told the nation ... he’s going to prioritize research on long COVID" www.scientificamerican.com/article/hhss...
- Retrospective large study looking at sotrovimab used on Covid patients had a 8% decreased risk of getting Long Covid. Their definition of Long Covid is "≥ 1 of 26 PASC symptoms ≥ 30 days after the first COVID-19 diagnosis" link.springer.com/article/10.1...
- A drug called DR-0201 in early human testing may have the ability to “reset” a patient’s immune system and ward off debilitating inflammatory diseases. It can engage specific immune cells that can prompt the body to deplete disease-causing B cells. www.biopharmadive.com/news/sanofi-...
- "4.8% of respondents reported having LC, and 9.1% were unsure." "Improved awareness is needed amongst the general population and health care professionals to ensure those most vulnerable in society are identified and provided with care and support." onlinelibrary.wiley.com/doi/10.1111/...
- "This showed that 4.8 per cent of people report suffering from long Covid, while a further 9.1 per cent believed they may have it but are not sure." The times finally reports on the GP survey from last year! www.thetimes.com/uk/healthcar...
- "It is concerning that the current government has picked up the baton of the previous government in ignoring the inconvenient truth that Long Covid presents." A good (long) article about the inquiry and righteous anger around Long Covid's handling. www.thereforme.uk/p/probing-an...
- At its peak, there were over 120 Long Covid services nationwide, but now: - Only 46 have confirmed they will remain open. - 31 are under review. - 24 have already closed or are set to close. - 20 did not respond. www.longcovid.org/impact/news/...
- "this unfortunate misreading and misattribution by others of an erroneous reference in the Background section of Lim et al.’s article, there is widespread underestimation of the true burden of ME/CFS" Argues for 71.2 million from Lim et al translational-medicine.biomedcentral.com/articles/10....
- Today is my 5 year anniversary of #LongCovid. 1826 days of confinement to bed. The situation internationally for sufferers is worse today than it was 1 year ago with little new research funding and the clinics shuttering. There are still zero approved/working treatments.
- 348 HCWs employed in Portugal. "223 participants (64.1%) reported a history of long COVID. Extreme fatigue was reported by 158 participants (57.0%), cognitive dysfunction by 118 participants (42.6%)" pubmed.ncbi.nlm.nih.gov/40084175/
[Not loaded yet]- The highest estimate of prevalence in healthcare workers I have seen, most of the studies are a bit older and often from 2023 whereas this is just under a year old survey. 60% is really concerning!
- "These results suggest that HCWs in Portugal have a prevalence of the disease similar to that of the worldwide population" "Concerning performance at work, having two or more chronic diseases showed a trend towards lower performance, as well as extreme fatigue and cognitive dysfunction"
- 5 short Stories of people still impacted by the pandemic - Long Covid and the impact it has on their partner - A mother with an autistic child due to education issues from lockdown - A fathers death -Someone CV - PTSD from all the deaths www.theguardian.com/world/2025/m...
- "the leading reason for drugs to fail human safety tests has nothing to do with whether or not the drugs are safe; it’s because the scientists run out of cash" "late-phase human experiments is called the “valley of death”." www.theguardian.com/news/2025/ma...
- "two years after initial infection, 24.0% of 1,547 respondents reported ongoing Long COVID symptoms" "The ongoing burden of Long COVID and related disability is substantial and warrants increased attention by the public health and medical communities." www.ajpmonline.org/article/S074...
