ME/CFS Research @cfs_research
Interested in research into ME/CFS, functional disorders, overtraining syndrome and related conditions. medium.com/@cfs_research Joined November 2017-
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This is a big one! Major teamwork from the Division of Clinical Physiology with this publication: Functional Limitations and Exercise Intolerance in Patients with Post-COVID Condition (Thread). jamanetwork.com/journals/jaman…
Researchers See Hope in Symptom-Guided Exercise for Long COVID With Postexertional Malaise jamanetwork.com/journals/jama/…
Please note: Apart from #MECFS and #LongCOVID, Post-exertional malaise can be found in cancer-related fatigue, gulf war illness syndrome, Post-treatment Lyme disease syndrome and possibly other syndromes. We need to further investigate this key symptom and common mechanisms.
Interesting study. Quite small, but plausible mechanism. Possibly useful to try replicating? Maybe the first actual useful use for these drugs, as they aren't very good as decongestants.
Interesting study. Quite small, but plausible mechanism. Possibly useful to try replicating? Maybe the first actual useful use for these drugs, as they aren't very good as decongestants.
Did you know that constant overthinking and mental stress can have profound effects on your physical health? From headaches to digestive issues, the toll of stress on the body is far-reaching and.. #MindBody #MentalHealth #Fibromyalfia #FND #MECFS #POTS fndhealth.com/post/the-mind-…
#MECFS Recovery Stories healwithliz.com
@cfs_research @MEAssociation @VibekeVind @JrRawnsley It is very disappointing the author has been ill-informed by @BinitaKane, and that this article has been endorsed by the @MEAssociation, as this could potentially cause substantial harm to children who have Functional Neurological Disorder.
Neurasthenia as a model of a disease thought to have disappeared. On an unpublished letter by Jean-Martin Charcot Neurosciences and History 2024;12(1):20-29 nah.sen.es/vmfiles/vol12/… Scope and instructions for authors: nah.sen.es/en/about/aims-… nah.sen.es/en/authors/ins…
The optimal exercise intervention for sleep quality in adults: A systematic review and network meta-analysis. pubmed.ncbi.nlm.nih.gov/38641082/
Validity and diagnostic overlap of functional somatic syndrome diagnoses sciencedirect.com/science/articl…
Watch as a Co Fermanagh woman who was bedbound for more than two decades fulfilled her dream of climbing the Stairway to Heaven climb in her native county.
Here's a thing I wrote about my ongoing recovery from #LongCovid. It's been a hell of a journey! I'll be sharing more in time, but for now I'm waaay behind deadline on a book project from the before times. I hope this proves helpful--don't give up hope✊ sierraclub.org/sierra/2023-4-…
Still looking for people to share their experience of using the Curable app for chronic pain. 📢 Reach out to [email protected] if you would be interested in sharing your story! 📧 I'd be incredibly grateful for a share if you think someone you know might be interested🤗
Dear X Friends, underestimated, underrecognized and severely undertreated: #stress & stress intolerance & its #self-management in people with persistent #pain in #musculoskeletal and #cancer conditions: open access link authors.elsevier.com/a/1ivAR51N1vyn… @BrazJPhysTher
Brilliant from Fiona. I found her story so inspiring when I was recovering. Particularly because she had herself been deeply skeptical of this work before. (FYI unlike Fiona I *did* find the Lightning Process helpful - I think different mind body stuff helps different people).
Brilliant from Fiona. I found her story so inspiring when I was recovering. Particularly because she had herself been deeply skeptical of this work before. (FYI unlike Fiona I *did* find the Lightning Process helpful - I think different mind body stuff helps different people).
@GoreLloyd @BH5170835825574 I find it strange that so many in the mecfs community are anti bps (=anti science). Im glad this was never the case for me, and that definitely helped me recover.
Excellent start-to-finish narrative from Fiona about her recovery from long-term severe ME. "The biopsychosocial model is nothing to be feared. It is amazing. The brain is amazing." @MEAssociation
Excellent start-to-finish narrative from Fiona about her recovery from long-term severe ME. "The biopsychosocial model is nothing to be feared. It is amazing. The brain is amazing." @MEAssociation
Looking to make a start on the neuroplastic approach to #chronicpain #chronicillness or #mecfs? You can access a 6-week free trial of the @curablehealth app here: getcurable.com/livingproof. We receive $15 for each sign-up - which directly supports our non-profit work in this field.
When @loulouscorpio came on the pod! open.spotify.com/episode/69hRYn… #thepaincoach #chronicpain #painriffs
FND Portal @FndPortal
7K Followers 2K Following A person with Functional Neurological Disorder. News + musings on FND, disability, brain sci. When we work together we can change it for the better. He/him.
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7K Followers 2K Following A person with Functional Neurological Disorder. News + musings on FND, disability, brain sci. When we work together we can change it for the better. He/him.
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“The findings suggest cautious exercise adoption could be recommended to prevent further skeletal muscle deconditioning and health impairment in patients with PCC.”
This is a big one! Major teamwork from the Division of Clinical Physiology with this publication: Functional Limitations and Exercise Intolerance in Patients with Post-COVID Condition (Thread). jamanetwork.com/journals/jaman…
We acknowledge that some patients are more severely affected than those examined here. The signs of muscle problems are interesting - they are consistent with a recent publication by @RobWust and are being investigated further. We are also conducting a 1-year follow-up of these…
We conclude that previous guidelines discouraging exercise were probably too strict and that a cautious introduction of exercise could be recommended to prevent further skeletal muscle deconditioning and adverse health outcomes in patients with PCC.
The Influence of Exercise on Cancer Risk, the Tumor Microenvironment and the Treatment of Cancer link.springer.com/article/10.100…
@SaraAna66550269 @dysclinic Of course it could be all of these conditions. But it can be FND together, it must be evaluated. What is the problem? FND is a biological condition! We have to get out of our heads that FND is psychological
@dysclinic All good. Apparently she was well taken care of. I'm happy for her. Regardless, FND may be comorbid in 20% of chronic patients. Therefore, it is not unreasonable for patients to be evaluated. With trained and sensitive doctors of course.
@dysclinic Doctor, But conditions can be comorbid. FND is also debilitating and needs recognition.
@cfs_research @lifeanalytics This field is hard because it has been neglected from psychiatry. Here is the most concise paper: journals.sagepub.com/doi/full/10.11… Now in terms of PEM, I have seen it reported by a tons of people but I have not seen it specifically analyzed in a paper
@lifeanalytics also common in protracted acute withdrawal from psychotropics
@sfadigacronica No, i think he was describing the narrative that got him interested in something he previously knew nothing about. Of course it could be coincidence. Then he went looking for the trials and was surprised to find out there was a lot of evidence that it was a helpful intervention
@phi_psd How would she know? Is she religiously following all the studies? Speaking to the top researchers? These doctors need to stop making definitive statements. There’s plenty of people who do recover well past the 12 month mark. My doctor still thinks Covid is a cold. Useless.
@edu_imad @trentgarrison @PutrinoLab Yes. I've been a group leader 4 a walking group that walks 2 1/2 to 3 miles at a decent pace, h/ worked w/ a personal trainer on weight-resistance exercises, & can dance like I used 2 before I had CFS/ME. I'd say my recovery is pretty close to 100%. I mostly can do what I want.
@StuckinEbed @KH118118 Kim is super kind and sympathetic. He never acted against the community. She even advocates behind the scenes. Trust in me.
@cfs_research I think it’s the nastiness that made me reply to Kim tbh. I don’t want to feel bad, ashamed or disrespected bc I was given a diagnosis of FND. And I have had nasty comments where I’ve respectively replied. Likewise I don’t want to feel bad disrespected etc for having ME. 1/
@cfs_research I do get that. Certainly my adult children have taught me a lot about embracing mental health in the same way as physical health That’s why I’ve become more open about the possibility of ACE affecting my neurology But now I don’t care what’s caused it, I just want my body fixed!
@cfs_research I don’t condone nasty attacks at all & I’m sorry if you’ve had them. I’m new to X due to Millie & Carla so don’t know your journey But I can see how messages can be misinterpreted as we’re not actually speaking so no tone I think everyone needs to be respectful despite opinions😊
@FairlieHall @cfs_research @jason_isaia From an outside point of view, I think part of the problem is patient charities are being drowned out by aggressive activism. It hinders being able to educate, and leads to resistance to listen. It’s such a mess, and clearly contributing to long term suffering.
@cfs_research @KH118118 @jason_isaia I think what is even more problematic is how our medical professionals have been influenced by this kind of science to assumes our issues are to do with deconditioning. Last year when I was deteriorating my GP said that I should consider doing some exercise.
Comment then block me to deny me the chance to respond .. what a surprise 🙄. It is helpful to read things without the noise. That doesn’t mean it’s an endorsement. It’s about being well informed to make your own decisions.
@KH118118 I understand the anger. But that won't help you convince. In fact, I recommend you read it. We should not be afraid of information that goes against our beliefs. In fact, there are a lot of cool articles on the subject.
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