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The stigma surrounding #MECFS. Maeve Boothby-O’Neill knew the doctors didn’t believe in ME/CFS and were going to let her die: “She went into the Royal Devon and Exeter hospital (RDE) three times but asked to go home because she knew she was going to die.” theguardian.com/society/articl…

This problem also applies to people with #MECFS. ☹️facebook.com/chronicpaininf…

Study shows that transcobalamin receptor antibodies cause central but not peripheral B12 deficiency. Although the study was not performed on people with #MECFS, it shows that normal results in blood tests don’t rule out B12 deficiency in the CNS. science.org/doi/10.1126/sc…

#MECFS is a serious, chronic multisystem illness that affects all age groups, genders, and races. Many people dismiss it and believe it cannot affect them just because they presently are healthy. All people are at risk, and, yes, even doctors may get ME/CFS. #MEAwarenessHour

Preprint, MRI study: Distinct patterns of axial diffusivities alterations in post-infectious #MECFS and gradual-onset #MECFS provide neurophysiological evidence of different disease processes and highlight the heterogeneities of ME/CFS. medrxiv.org/content/10.110…

“ME/CFS broke my body, the indifference of the world broke my heart.” – Christina Baltais, ME/CFS patient #MECFS #MEAwarenessHour

How fitting! One of the first ME epidemics to gain international attention was the one in Akureyri, Iceland, in 1948. Now, a national center of excellence for #MECFS has opened in Akureyri. Congratulations, Iceland! mbl.is/frettir/innlen…

Secret seminars for collaborators, false allegations of police protection, panic button for Professor, #MECFS advocates compared to animal rights activists, repeated claims of death threats unsupported by evidence … There seems to be an epidemic of paranoia in the BPS ranks! 🙄

Patients with #MECFS want to recover. If they can’t recover because there is no specific treatment, they want support and respect. They are denied the former due to lack of research and the latter due to lack of recognition. That leaves patients in a limbo. #MEAwarenessHour

Svenska covidföreningen har skickat en välformulerad skrivelse till Socialstyrelsen med kritiska synpunkter på det uppdaterade kunskapsstödet för postinfektiösa tillstånd, vilket även omfattar ME/CFS. Tack, Svenska Covidföreningen! #SvMECFS covidforeningen.se/skrivelse-till…

Forget ME not! ME is a neurological illness that affects tens of millions of people worldwide. Severe cases may be bedridden, unable to care for their basic needs, and sensitive to sound, light, and touch. Despite its severe nature, patients are often dismissed. #MEAwarenessHour

Norwegian study: “[… Some] patients with fatigue [but] without PEM did report an improvement with treatments such as CBT, GET and LP. If such patients are included in a study jointly with [#MECFS patients] with PEM, this may lead to false study results.” tandfonline.com/doi/full/10.10…

Quote about “providing hope” to patients with #longcovid and #MECFS from a review of the book “The Lady’s Handbook for her Mysterious Illness”. The book is written by Sarah Ramey and was reviewed by Elke Hausmann, GP in Derby. bjgplife.com/book-review-th…

Opinion piece calls for better care of people with #MECFS: “This includes not only increasing funding for research and improving clinical care but ensuring that the voices of […] ME patients are central to health service planning and policy development.” ebn.bmj.com/content/early/…

This is the reality of #MECFS: a) it is seriously debilitating, b) although the cause is unknown, many physiological abnormalities have been reported, c) psychological interventions have not resulted in objective improvement, d) the problem will not go away. #MEAwarenessHour

Big data study: #MECFS is visible in the blood! “These new results are remarkable, showing a biological signal of ME—a clear sign of abnormal biology in the blood that has only been revealed now that patients have been looked at as a very large group.” meassociation.org.uk/2024/09/resear…

Tack, RME, för en mycket välformulerad debattartikel med kritik mot Socialstyrelsens kunskapsstöd för ME/CFS! Socialstyrelsen förlitade sig rehabiliteringsexperter utan specifik kunskap om ME/CFS och tog inte till sig internationell forskning. dagensmedicin.se/opinion/debatt…

Debattartikel från bl.a. Svenska covidföreningen och Fysioterapeuterna med kritik mot Socialstyrelsens kunskapsstöd för postinfektiösa tillstånd: ”Kunskapsstödet underlåter att förmedla den kunskap som finns och ger rekommendationer som kan skada.” dagensmedicin.se/opinion/debatt…