The Century Foundation "A Paradigm Shift in Research for Infection-Associated Illnesses"
An article by Ryan Prior on the need for "an Office at the National Institutes of Health (NIH) solely dedicated to researching infection-associated chronic illness”
https://tcf.org/content/commentary/a-paradigm-shift-in-research-for-infection-associated-illnesses/
nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #longcovid nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub1kdrxl3axkf9cvzrpxkekvvfve4f0934endp2mvv94c6akucgk7rq8u4ztz #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME
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The Times (UK):
“NHS told to stop blaming ME patients for being ill and improve care”
Sean O’Neill: "My daughter Maeve succumbed to ME in her teens and died, aged 27, in 2021 after the illness became severe and totally debilitating. She struggled to get doctors and social workers to understand. And for years I also found it hard to accept and understand her illness."
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #pwme #pwmes #cfs #cfsme
New:
UK:
Open consultation
Improving the experiences of people with ME/CFS: interim delivery plan [a government plan]
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
Canada ICanCME Research Network Funding Announcement
"... a national research network funded by the Canadian Institutes of Health Research (CIHR). .. The ME Stars of Tomorrow Scholarship Program supports the work of promising graduate students who are conducting Myalgic Encephalomyelitis research as part of their masters or doctoral research project."
https://mailchi.mp/de70b9160260/icancme-research-network-funding-announcement_sot-2023
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #mecfs #cfs #pwme #pwmes #myalgice
NIH launches #longCOVID clinical trials through RECOVER Initiative, opening enrollment
The trials are grouped as follows:
RECOVER-VITAL testing the antiviral Paxlovid
RECOVER-NEURO for brain fog with trials testing brain training, web based goal management training, and transcranial direct current stimulation.
(Contd)
nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #covidlong #postcovid #postcovid19 #pasc #covidlonghauler #covidlonghaulers
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nostr:npub1pmxc6x4m8cf2gemjktdhu7vmf87kaprlq8t88fm2n25pzyp5sf9qdzexkq nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd This sounds like it could be good, but people should be very wary about these television show people. I don’t remember the name of that awful series on Netflix where they claimed they were spreading awareness about invisible illnesses, but what they were really doing was just ridiculing people who suffered from them. It was gross and we don’t want more of that.
This is a BBC programme. I think they should be responsible. nostr:npub12nelzy5hsj8wd5wq5vz2cc4m9hv8ar096ru52g4kkdqm30p0dwkq9kxj50 nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
USA Government Department of Health and Human Services
"HHS Announces the Formation of the Office of #LongCOVID Research and Practice and Launch of Long COVID Clinical Trials Through the RECOVER Initiative"
nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #postcovid #postcovid19 #pasc #covidlong #covidlonghauler #covidlonghaulers
Nature:
Connecting the dots from viral infection to disease
An editorial on the importance of research into viruses as causative agents of disease. "... multi-centre collaborations are needed to enable well-documented, large, longitudinal cohort studies…in order to unravel the complexities of virus-induced diseases, such as #LongCovid and ME/CFS."
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #cfs #mecfs #pwme #pwmes #cfsme #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
From ME Association
If you took part in the PACE Trial, would you be willing to revisit your experience for research for a TV medical show? Details on the ME Association's Facebook page | 6 August 2023:
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
From their latest newsletter:
"Emerge Australia's Education team has been working hard over the past 12 months to develop a set of resources directed at GPs and other Allied Health professionals. The new section on the website provides a range of information, support and professional development options "
See info here:
https://www.emerge.org.au/health-professionals/
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #MedEd #MedMastodon
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"It is important to consider that patients with ME/CFS may be more sensitive to a range of medications; this also needs to be considered when treating other conditions, having in mind also the possibility of drug interactions."
#MEcfs #CFS #PwME
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Regarding the mention of sleep hygiene, some advice can be useful; others can sometimes even be counter-productive in ME/CFS I think so it depends what is recommended
#MEcfs #CFS #PwME nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
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"It is important to consider that patients with ME/CFS may be more sensitive to a range of medications; this also needs to be considered when treating other conditions, having in mind also the possibility of drug interactions."
#MEcfs #CFS #PwME
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
Applying Lessons from Rheumatology to Better Understand #LongCOVID
https://acrjournals.onlinelibrary.wiley.com/doi/10.1002/acr.25210
"Their persistent symptoms are strikingly similar to those of #fibromyalgia (FM) and #myalgicencephalomyelitis/#chronicfatiguesyndrome (#MECFS)"
#CFS #MyalgicE #PwME nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
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Applying Lessons from Rheumatology to Better Understand #LongCOVID
https://acrjournals.onlinelibrary.wiley.com/doi/10.1002/acr.25210
"Their persistent symptoms are strikingly similar to those of #fibromyalgia (FM) and #myalgicencephalomyelitis/#chronicfatiguesyndrome (#MECFS)"
#CFS #MyalgicE #PwME
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
Applying Lessons from Rheumatology to Better Understand #LongCOVID
https://acrjournals.onlinelibrary.wiley.com/doi/10.1002/acr.25210
"Their persistent symptoms are strikingly similar to those of #fibromyalgia (FM) and #myalgicencephalomyelitis/#chronicfatiguesyndrome (#MECFS)"
#CFS #MyalgicE #PwME nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
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Fig. 1 Kinetics of M wave variations measured after the exercise.
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #mecfs
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"The peripheral muscle fatigue is documented in ME/CFS patients. Indeed, post exercise M-wave alterations are absent in healthy subjects, for whom the amplitude of myopotentials either does not vary or even increases with the incremental pedaling force. By contrast, in a large proportion of ME/CFS patients (60 to 70%) a dynamic cycling exercise induces a reduction of muscle membrane excitability which often persists during the post-exercise recovery period"
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #MEcfs #CFS #MyalgicE #PwME
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Fig. 1 Kinetics of M wave variations measured after the exercise.
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #mecfs
#LongCOVID: Alice Evans, #brucellosis, and reflections on infectious causes of chronic disease
https://academic.oup.com/cid/advance-article-abstract/doi/10.1093/cid/ciad427/7225581
“Many long COVID patients today will recognize the fatigue Evans describes in her request for work-from-home accommodations, & the frustration she describes at her colleagues’ suggestion that chronic Brucella infection is merely an excuse to collect disability insurance.”
nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg #neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
