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ME/CFS research
@cfsresearch.bsky.social
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mistakes. If all the decent people leave then it just leaves the trolls, which doesn't seem right.
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ME/CFS research@cfsresearch.bsky.social |
28 followers 11 following 58 posts
Interested in research into ME/CFS, FND and related conditions.
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ME/CFS research
@cfsresearch.bsky.social
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mistakes. If all the decent people leave then it just leaves the trolls, which doesn't seem right.
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ME/CFS research
@cfsresearch.bsky.social
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Sorry to hear that. You're one of the few people I follow here, and I'm also fed up with SM bullying. There are things you can do to mitigate it: block anyone immediately when they attack, and everyone who joins in. Call out bad behaviour. and stand up for your values. Apologise and correct your
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ME/CFS research
@cfsresearch.bsky.social
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I recovered from ME/CFS around then. Things haven't really changed much. Perhaps for the worse if anything.
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ME/CFS research
@cfsresearch.bsky.social
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There is funding. Ive attempted to provide funding myself. Omf has millions of dollars, as does me assn. Also lots of replicated research. People like you attacking anyone discussing research is part of the problem. Blocking now.
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ME/CFS research
@cfsresearch.bsky.social
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There is actually no replicated evidence.
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ME/CFS research
@cfsresearch.bsky.social
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No, there is no evidence of that. A press release of a small unreplicated study with small differences between controls and patients certainly isnt evidence.
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ME/CFS research
@cfsresearch.bsky.social
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Why do you say Long Covid and ME/CFS are not psychosomatic?
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ME/CFS research
@cfsresearch.bsky.social
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Yes, unfortunately that is quite common, and doctors don't really have the time (or knowledge) to explain it properly.
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ME/CFS research
@cfsresearch.bsky.social
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stigma that society has to anything psychiatric?
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ME/CFS research
@cfsresearch.bsky.social
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Can you explain why you found it devastating? I was just discussing this issue with a fellow recovered patient and psychologist today, and neither of us had any hangups about stress being a factor in our illness. I know many patients do, but am struggling to understand it. Is it just the general
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Nikos Panaousis
@panaousis.com
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This is how I visualize the recovery process for fibromyalgia, CFS and other chronic disorders. An initial trigger catapults you into the abyss, and from that point onwards, you are constantly traversing a fine line: to surrender or to push on?
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Liz Highleyman
@lizhighleyman.bsky.social
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Very long-awaited data from NIH #MECFS study.
"For decades, it was considered a women’s condition, and patients were told it was in their heads. Now research leaves no doubt: ME/CFS is a disease with clear biological hallmarks."
www.statnews.com/2024/02/21/n...
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Long Covid Advocacy 💙
@longcovidadvoc.bsky.social
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🌟Great to see this finally published
🧪Some clear biological findings
🤔Yet some odd findings that don't align with patient experience
- no orthostatic intolerance or small fibre neuropathy found
-the altered effort preferences is 😳
www.nature.com/articles/s41...
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Michael Sieverts
@yogafogie.bsky.social
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This this the press release for the publication of results from the major study at NIH on ME/CFS. The paper is in Nature Communications. #Long COVID
www.ninds.nih.gov/news-events/...
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Annette
@annettejha.bsky.social
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NIH study offers new clues into the causes of post-infectious ME/CFS
www.ninds.nih.gov/news-events/...
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ME/CFS research
@cfsresearch.bsky.social
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Im recovered.
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ME/CFS research
@cfsresearch.bsky.social
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My resting heart rate is around 60. If I go from lying on the sofa to standing, it goes to about 100-110, but then drops to 90 after a minute, and then drops further. I think that is fairly normal. If your activity level is lower than mine, your HR will be higher.
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ME/CFS research
@cfsresearch.bsky.social
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Yes, I completely agree about the budget, and I experienced the same. I just don't know if HR is a useful measurement.
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ME/CFS research
@cfsresearch.bsky.social
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There isn't any evidence that HR monitoring is useful for avoiding crashes (the one study that looked into it found it was not). And 110bpm isn't necessarily a problem. My HR goes to about 110 on standing for the first minute and then settles down. (I'm fit and healthy with no symptoms).
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ME/CFS research
@cfsresearch.bsky.social
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Looking forward to seeing what you do. I guess it partly depends on what you intend doing, and whether the PhD would provide sufficient value for that given the cost and effort involved.
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ME/CFS research
@cfsresearch.bsky.social
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No, I wasn't caring for anyone, and a key part of my recovery was quitting my job. Since then I have worked full time again though.
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ME/CFS research
@cfsresearch.bsky.social
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I said I was happy to post research, and asked which ones you wanted to see, and no I certainly do NOT support "abusive programs without scientific merit". Why do some patients feel the need to be so angry, nasty and toxic? Blocking you now.
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ME/CFS research
@cfsresearch.bsky.social
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Yes. Mostly stress reduction, and gradually replacing stressful activities with positive, uplifting ones.
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ME/CFS research
@cfsresearch.bsky.social
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patients who recover (at least, the ones with ANS predominant symptoms).
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ME/CFS research
@cfsresearch.bsky.social
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stressors significantly affect the balance of the ANS. Speaking for my own symptoms, they were all consistent with a disturbed ANS, and doing my own "brain retraining" (basically, addressing stressors) allowed me to fully recover and resolve all of those symptoms. The same seems to be true for many
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ME/CFS research
@cfsresearch.bsky.social
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In terms of quality of evidence, I think the main aspect to look at (at least for ME/CFS, which is where my interest lies) is in the ANS. There is strong evidence that the ANS is responsible for many if not all of the main ME/CFS symptoms, and it is very well established that both chronic and acute
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ME/CFS research
@cfsresearch.bsky.social
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Well I'm not familiar with any brain training programmes other than LP. It doesn't lie to patients, although some LP practitioners are in the habit of gaslighting patients if they don't recover. That's why I don't recommend those programmes, and patients should do their homework.
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ME/CFS research
@cfsresearch.bsky.social
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Sure, which ones? They are all on google scholar, but I can post links to any studies if you want.
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ME/CFS research
@cfsresearch.bsky.social
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programmes, or do your own research and figure out your own path to recovery.
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ME/CFS research
@cfsresearch.bsky.social
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While I agree that many of these programmes are not very scientific, there is good evidence behind "brain retraining" (in terms of CBT) with objective measures such as HRV, grey matter, morning cortisol, etc. I think it's always better to go to a proper trained practitioner rather than using these
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ME/CFS research
@cfsresearch.bsky.social
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We've seen this sort of thing for over 30 years in the ME/CFS world. Longcovid research is a new version of the same bandwagon and overhyped media articles. There was a newspaper article in the mid 90s with news of "proof" the ME is physical, from a (now long forgotten) test I think.
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ME/CFS research
@cfsresearch.bsky.social
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symptoms. Unfortunately we don't have any non-invasive way of measuring vagus nerve activation.
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ME/CFS research
@cfsresearch.bsky.social
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Those hormones are affected in some of the same ways by infections such as covid, as they are with psychological stress: HPA axis activation then suppression, suppression of parasympathetic nervous system, cytokine release, etc. I would say that ANS dysfunction can explain the majority of the worst
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ME/CFS research
@cfsresearch.bsky.social
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Longcovid seems to be a number of different things, including lingering effects of the infection, hospitalization, etc., but pre-illness stress seems to be one of the few replicated findings (similar for ME/CFS).
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ME/CFS research
@cfsresearch.bsky.social
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Also, PEM quite often has nothing to do with muscle soreness in many patients.
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ME/CFS research
@cfsresearch.bsky.social
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You posted an unreplicated study that has large overlap in scatter graphs between patients and controls, and doesn't appear to control for the large number of multiple comparisons as far as I see (no mention of Bonferroni or similar). Looks like it's basically a fishing expedition from what I see.
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ME/CFS research
@cfsresearch.bsky.social
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It should also be noted that deconditioning has nothing to do with psychosomatic whatsoever either.
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ME/CFS research
@cfsresearch.bsky.social
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illness with ME/CFS, it does seem to be the case that psychosomatic factors play a large part.
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ME/CFS research
@cfsresearch.bsky.social
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Classifying it as organic or psychosomatic doesn't make sense. Viral infections and psychological stress seem to both be factors, so I wouldn't say a viral infection is psychosomatic. I would say the root cause is likely a dysfunction in the stress system (ANS, HPA axis, etc). In terms of long-term
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ME/CFS research
@cfsresearch.bsky.social
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I think it depends on the journal and the decision made. In the cases where the paper is returned with negative peer review comments and is rejected, there is no opportunity to disagree (and it seems pointless to do so if the journal rejects the article).
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ME/CFS research
@cfsresearch.bsky.social
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negative stereotypes of psychiatric and psychosomatic illness, but ultimately unhelpful if those factors play a part in the illness (which they seem to).
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ME/CFS research
@cfsresearch.bsky.social
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The problem is that this doesn't fit with the evidence from trials, which show that psychosomatic factors are important, or the experiences of patients. It is also illogical to agree that stress plays a role, but psychological stressors do not. It's understandable to distance oneself from the
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ME/CFS research
@cfsresearch.bsky.social
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would actually consider the critique, as they quite often have the same biases as the reviewers. Some sort of public peer review system might address both issues.
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ME/CFS research
@cfsresearch.bsky.social
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I've seen two main problems in peer review: [1] crap science continually passing peer review in major journals. [2] peer reviewers rejecting a paper for nonsensical reasons. I think letting the authors critique the peer reviews might help [2], although I'm not terribly confident that the editors
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ME/CFS research
@cfsresearch.bsky.social
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Are you saying that psychology doesn't affect biology?
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ME/CFS research
@cfsresearch.bsky.social
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It uses the word "replicable", but if you actually look at those studies you will see none of them has been replicated, other than 2-day CPET.
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ME/CFS research
@cfsresearch.bsky.social
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Sunak's parents.
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ME/CFS research
@cfsresearch.bsky.social
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Well it looks like Shepherd is correct in this instance. That is a very small, unreplicated study, and it isn't really all that convincing (large overlap between patients and controls). Definitely not something that should be the basis of any clinical trial.
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ME/CFS research
@cfsresearch.bsky.social
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of my own recovery.
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ME/CFS research
@cfsresearch.bsky.social
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I would suggest looking for recovered patients, if you are interested. We don't hang out in forums, as they tend to be very negative and push out recovered patients. While we can't always remove all stressors, we do have a lot of control over many of them, and removing those stressors was about 90%
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