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On the one hand, medical science is beginning to get a handle on the very complex physiological basis of this disease. On the other hand, we can expect the greatest medical scandal (so far) of the 21st Century – the mass mistreatment and neglect of ME/CFS sufferers – to continue.
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
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Third delay to #ME care plan prompts backlash from patients.
We #pwME are put firmly onto the back burner once again. No ring fencing for research, apparently no money available at all.
Let’s face it, they just don’t care.
www.thetimes.com/article/a09b...
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MISSING Photo of Tom Kindlon TOM K ME/CFS SINCE 1989 MISSING FROM: GRADUATING, SPORTS, WORKING, INDEPENDENCE & LIVING IN MY OWN PLACE, TRIPS ABROAD, RELATIONSHIPS, CAREFREE LIVING WITHOUT DOZENS OF SYMPTOMS #MILLIONSMISSING #EMERGEAUSTRALIA #MECFS
I'm one of millions missing from our lives due to Myalgic Encephalomyelitis, each with their own challenges and losses.
Unlike Covid lockdowns, the lockdowns we have dealt with for years due to #ME continue
#May12 #MEcfs #PwME
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well, the crowdfunder has reached two-thirds of the goal and there's still several days left! It's a very tough time all around so I'm pleased it's done this well: crowdfund.berkeley.edu/project/46120
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Pls take a minute to vote for Invest in ME Research & help them receive a share of £500,000 in grants at MyGivingCircle.org.
Every vote counts, so let's rally together & make an impact. It’s free to vote so go on… pls
🙏🏻
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#pwME #MECFS
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APPENDIX 2. ME/CFS Symptom Prevalence and Severity (These prevalence and severity figures are from A definition-based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome, P. De Becker, N. McGregor, and K. De Meirleir. Journal of Internal Medicine 2001;250:234-240.) A total of 2,073 consecutive patients with major complaints of prolonged fatigue were assessed. Among them 1,578 met the Fukuda criteria and of those, 951 met the Holmes criteria. The figures indicate the differences in prevalence and severity of symptoms between these patient groups.
I thought I would repost this to highlight again some of the many varied symptoms that can be found in #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome
Particularly relevant when similarities with the #LongCovid presentation in some people are being missed
#MEcfs #CFS #PwLC
1/
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Do graded activity therapies cause harm in chronic fatigue syndrome? Tom Kindlon 1 Affiliations expand PMID: 28805516 DOI: 10.1177/1359105317697323 Abstract Reporting of harms was much better in the PACE (Pacing, graded Activity, and Cognitive behavioural therapy: a randomised Evaluation) trial than earlier chronic fatigue syndrome trials of graded exercise therapy and cognitive behavioural therapy. However, some issues remain. The trial's poor results on objective measures of fitness suggest a lack of adherence to the activity component of these therapies. Therefore, the safety findings may not apply in other clinical contexts. Outside of clinical trials, many patients report deterioration with cognitive behavioural therapy and particularly graded exercise therapy. Also, exercise physiology studies reveal abnormalities in chronic fatigue syndrome patients' responses to exertion. Given these considerations, one cannot conclude that these interventions are safe and risk-free. Keywords:
It's 8-year anniversary of this paper of mine. It could be useful if somebody feels coerced into doing graded activity or exercise programmes; also to counter claims that the #PACEtrial showed graded activity programs are safe.
journals.sagepub.com/doi/full/10....
#MEcfs #CFS #MyalgicE #CBT
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