6 ms·

Regular exercise makes it worse because of PEM [1], and graduated exercise therapy is contra indicated [4] because their ATP energy system doesn’t fully work [2

Regular exercise makes it worse because of PEM [1], and graduated exercise therapy is contra indicated [4] because their ATP energy system doesn’t fully work [2]. You could cripple them by forcing progressive exercise dogmatically. Talk therapy is no longer recommended [2] and many antidepressants are not effective [3]. If you read the book Why Zebras Get Ulcers by Sapolski there’s this story about the African farmer who has his cow die, and can no longer farm or support his family after. Sapolski says in America you’d give antidepressants, in Africa you’d just chip in and buy a new cow. No offense, and as respectfully as possible while getting the point across, but you’re being a dick to your friend. These people bounce between doctors for years [5] because there’s no FDA approved diagnostic test, with a hyper complex disease that’s literally debilitating to them do you really think you can drive by diagnose and they just missed completely obvious and first pass treatment options? Your comment is the “I could build it in a weekend” response to ShowHN. Edit: note, I believe in somatic experiencing of symptoms, as described in the link to this threads article. For example there’s quite a few stories in the biography of Chairman Mao [6]of high status officials suffering “neurotic crises” and requiring bed bound recuperation, arguably because of the repressive environment they lived in. But ME/CF is completely different. 1. https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/treating-most-disruptive-symptoms.html https://www.cdc.gov/me-cfs/healthcare-providers/clinical-car... 2. https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext https://www.mayoclinicproceedings.org/article/S0025-6196(21)... 3. See dots in bottom left quadrant for Paxil/Zoloft/etc etc. https://www.researchgate.net/figure/CureTogethers-page-on-chronic-fatigue-syndrome_fig4_260148792 https://www.researchgate.net/figure/CureTogethers-page-on-ch... 4. https://me-pedia.org/wiki/Graded_exercise_therapy https://me-pedia.org/wiki/Graded_exercise_therapy quote: “ Graded exercise therapy (GET) is a form of physical therapy for the treatment of chronic fatigue syndrome (CFS) where physical activity is gradually increased over time. It is a treatment that was offered to ME/CFS patients in the UK by the National Health Service (NHS) as specified in the NICE guidelines from 2007-2021, but the recommendation was removed by the 2021 NICE guidelines because of high rates of harm.” 5. https://www.omf.ngo/what-is-mecfs/ https://www.omf.ngo/what-is-mecfs/ quote “ People with ME/CFS often go years before diagnosis, and 90% of sufferers have never been properly diagnosed.” 6. https://www.amazon.de/Mao-Biographie-Alexander-V-Pantsov/dp/3100616103/ref=asc_df_3100616103/?tag=googshopde-21&linkCode=df0&hvadid=310584974056&hvpos=&hvnetw=g&hvrand=5205177580789122569&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9062657&hvtargid=pla-562391598667&psc=1&th=1&psc=1&tag=&ref=&adgrpid=65851437750&hvpone=&hvptwo=&hvadid=310584974056&hvpos=&hvnetw=g&hvrand=5205177580789122569&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9062657&hvtargid=pla-562391598667 https://www.amazon.de/Mao-Biographie-Alexander-V-Pantsov/dp/...

patmcc 5y ago
I think you're reading more into my comment then is there. I didn't say anything about forcing progressive exercise or GET, CBT may not be widely effective but there are other forms of talk therapy not mentioned in your links, and your CureTogether link is self-reports, which also shows meditation as one of the most successful. And I'm a bit offended, you know nothing about my relationship to those in my life with CFS, I obviously don't tell them "it's all in your head, get some exercise", I just wish they'd be more open to different possibilities. I think CFS is likely a complex ailment, probably really several different things grouped together because of similar symptoms. Some of the people with what we call "CFS" may have some kind of post-viral syndrome, some may have a genetic disease, some may have depression/anxiety/stress, some may have a combination. I think the real error is stated pretty well in one link I found (somewhere in one of your links): "We now have evidence confirming what millions of people with this disease already know, that ME/CFS isn’t psychological," - to say outright that a disease that isn't yet well understood is absolutely not psychological is dangerous. CFS isn't measles or diabetes, we simply do not know the full cause(s) yet, period.
- texasbigdata 5y ago
  Ok fair on tone. Apologies. First you’re opining on what the disease is? It’s actually the converse to your preposition: it’s a giant symptom cluster (50+) and no one generally believes it’s multiple diseases lumped together. Read the Mayo paper. The rest of your comment has a logical fallacy which renders it moot: do they have a diagnoses, yes/no? If yes, then your “try other things” and “maybe it’s psychological” comments make no sense and are refuted clinically. It’s like saying “is your computer turned on? No? Ok, it’s probably a software bug. Let’s just be open to possibilities and not be close minded here.” Also a) you’re assuming they didn’t try therapy. And b) “they’d be open to more possibilities”…like what specifically? The self reports is 20k data points and they got bought by 23andMe; but we could pull PubMed and get to the same result. Nothing seems to work and more importantly other than a believed onset from a post-viral infection, there’s no known even rudementary understanding of how it works. Clinically there’s no known above zero effectiveness non-“say no to everything” modality. What do you suggest these people that have spent 2 to 3 years probably trying everything imaginable attempt? Like it’s so straight forward. Try talk therapy for a year and then try anti depressants. Oh it didn’t work across a gigantic cohort? And the scientific community generally agrees psychological isn’t a recommended approach? Very Donald Trumpian to say “who knows who knows, let’s keep an open mind here” with no backing on data to stand on other than an intrinsic belief regarding a clinical topic. You’re suggesting a high rate of false positives. The links show an expected 91% of false negatives (I’m assuming due to the sheer difficulty of diagnosis) and literally no comment of false positives. Not clear how you can defend that assertion.

patmcc 5y ago

I think you're reading more into my comment then is there. I didn't say anything about forcing progressive exercise or GET, CBT may not be widely effective but there are other forms of talk therapy not mentioned in your links, and your CureTogether link is self-reports, which also shows meditation as one of the most successful. And I'm a bit offended, you know nothing about my relationship to those in my life with CFS, I obviously don't tell them "it's all in your head, get some exercise", I just wish they'd be more open to different possibilities. I think CFS is likely a complex ailment, probably really several different things grouped together because of similar symptoms. Some of the people with what we call "CFS" may have some kind of post-viral syndrome, some may have a genetic disease, some may have depression/anxiety/stress, some may have a combination. I think the real error is stated pretty well in one link I found (somewhere in one of your links): "We now have evidence confirming what millions of people with this disease already know, that ME/CFS isn’t psychological," - to say outright that a disease that isn't yet well understood is absolutely not psychological is dangerous. CFS isn't measles or diabetes, we simply do not know the full cause(s) yet, period.

texasbigdata 5y ago
Ok fair on tone. Apologies. First you’re opining on what the disease is? It’s actually the converse to your preposition: it’s a giant symptom cluster (50+) and no one generally believes it’s multiple diseases lumped together. Read the Mayo paper. The rest of your comment has a logical fallacy which renders it moot: do they have a diagnoses, yes/no? If yes, then your “try other things” and “maybe it’s psychological” comments make no sense and are refuted clinically. It’s like saying “is your computer turned on? No? Ok, it’s probably a software bug. Let’s just be open to possibilities and not be close minded here.” Also a) you’re assuming they didn’t try therapy. And b) “they’d be open to more possibilities”…like what specifically? The self reports is 20k data points and they got bought by 23andMe; but we could pull PubMed and get to the same result. Nothing seems to work and more importantly other than a believed onset from a post-viral infection, there’s no known even rudementary understanding of how it works. Clinically there’s no known above zero effectiveness non-“say no to everything” modality. What do you suggest these people that have spent 2 to 3 years probably trying everything imaginable attempt? Like it’s so straight forward. Try talk therapy for a year and then try anti depressants. Oh it didn’t work across a gigantic cohort? And the scientific community generally agrees psychological isn’t a recommended approach? Very Donald Trumpian to say “who knows who knows, let’s keep an open mind here” with no backing on data to stand on other than an intrinsic belief regarding a clinical topic. You’re suggesting a high rate of false positives. The links show an expected 91% of false negatives (I’m assuming due to the sheer difficulty of diagnosis) and literally no comment of false positives. Not clear how you can defend that assertion.