Hi all, after DecodeME, the next big study could be SequenceME. Stay informed, and if you can, help make it real

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

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New pre-print from Prof Jonathan Edwards: The Concept of ME/CFS https://t.co/UFG1ey4Ue1 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Now published CDC-funded study: Cognitive assessment in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (ME/CFS) https://t.co/tShytvvhaP "The challenges of a clinic visit (including cognitive testing) can lead to further cognitive deficits" #MEcfs #CFS #PwME

We are excited to announce an $800,000 donation to Mount Sinai to support a clinical trial of the drug rapamycin in patients with long COVID. The trial will be conducted at CoRE: a clinic directed by Dr. David Putrino and PolyBio's Dr. Amy Proal: https://t.co/oAcPFtyne8

EMEA issued this statement at 74th Regional Committee Meeting for Europe on the agenda item discussing the State of Health in the WHO European Region https://t.co/dyoh6DwGQQ

A summary of the funded studies: 1. care and treatment needs of severely ill #MECFS patients 2. rare genetic variants 3. antibodies against the microbiota 4. mast cells 5. skeletal and heart muscle metabolism 6. glycosylation-related biomarkers 7. cerebral oxygen metabolism

Many young US Marines with mild Covid prospectively followed ~1 year developed #LongCovid sequelae

I really hope this isn't about ME/CFS - again. The "silencing" story around this illness has a. been inflated beyond recognition. b. been used for the past 13 years to protect bad science from effective scrutiny. https://t.co/qVjkbiHoNB

This study suggests that biological mechanisms underlying pathologic fatigue in #MECFS patients also underlie fatigue symptoms at a broader population level. https://t.co/IRxcl5hOKy

The ME Association refutes the letter regarding graded exercise therapy (GET) as a treatment for ME/CFS published in the Guardian Read more: https://t.co/ARN6bc1jgU #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #NICEGuideline #GET #CBT

New review: Assessment of the therapeutic potential of salubrinal for ME/CFS and long-COVID https://t.co/IVwbkqJJHk #MEcfs #CFS #PwME #LongCovid

Very interesting: another study found that muscle cells exposed to #MECFS and #LongCovid serum become dysfunctional. https://t.co/tJ4XQOv867

Exciting news: KATIANA IS HOME!! We could not have done this without the dire efforts of @ProperChels34 and many others. The community came together in an exceptional way over the past few days and I am so proud of all of us. Thank you so much to everyone who helped ❤️

Inspiratory muscle training improves autonomic function in myalgic encephalomyelitis/chronic fatigue syndrome and post-acute sequelae of SARS-CoV-2: a pilot study #MECFS The study has some important limitations, but still appears interesting. https://t.co/2dHrxhz2ah

A provisionally accepted paper has come out that claims oxaloacetate performed better than placebo in improving fatigue in #MECFS. https://t.co/tb35hJDHiY

There's also the psychologically vulnerable patient who will find it difficult to resist the narrative of being able to control the illness with simple techniques.

In some cases customers are told they must provide a positive story of their recovery, and that this will help them recover. The story is then used in marketing material. Some positive testimonials are simply the result of people getting better over time or for other reasons.

written by someone without a good knowledge of the human body or the illnesses they claim to be able to cure. These programs can seem superficially convincing and hope inspiring while having no substance. I strongly suspect a portion of the testimonials are fake.

These claims appear to be simply marketing for one of the many commercial brain retraining programs out there. These programs all use similar marketing: they tend to rely on testimonials and social media and use technical sounding language inspired by science, but apparently ..