#Australia
Research Participants Needed: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID
This is via the Emerge Australia e-newsletter
"Accommodating" doesn't sound very biopsychosocial so hopefully useful but I don't know any more.
@4183a04c
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @3a447f2a
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
https://assets.disabled.social/media_attachments/files/111/060/522/619/152/661/original/a7f4d9f9afd280c2.jpeg
"Can’t Sleep Since #COVID? There May Be Multiple Reasons Why"
'Damage to brain cells, plus changes to mitochondria, may be behind #longCOVID-related #insomnia & #chronicfatigue’
https://www.healthcentral.com/condition/coronavirus/cant-sleep-since-covid-there-may-be-multiple-reasons-why
“we examined the latest research & asked top viral experts to discuss the COVID-insomnia-chronic-exhaustion connection”
@3a447f2a #PwLC #LC #postcovid #COVIDー19 #COVID19 #COVID_19 #SARSCoV2
2/
One person's summary:
"This study hits on all the major aspects of why someone with pre-pandemic ME would be active in long hauler subs: Hoping long Covid research will make people view ME/CFS as a legitimate disease, hoping a treatment for LC will work for ME, and sharing/getting advice for overlapping symptoms."
@4183a04c@3a447f2a #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #longhaulers
4/
"Disabled people are expected to 1) cope cheerfully and positively accept their role as #disabled person; 2) pull ourselves together, minimizing the effect of #disability on our activities & colleagues; 3) strive to improve our condition & “get well” (if you think this seems diametrically opposed to expectation 1, you’re not the only one); 4) look after yourself with as little support as possible; 5) focus on recovery to return to or maintain employment"
@chronicillness @spoonies @disability
5/
“I thought you were getting better?” can hit like the pointy end of a very sharp sword sometimes. It feels accusatory. Like we’re being accused of not trying hard enough, that not getting better is somehow a personal failing, or even that we’re maybe just pretending that we’re as bad as we are for that imaginary #disabled bonus that many non-disabled people believe to exist."
#chroniclife #hiddenillness #invisibleillness @3567457b@04c95879 #Spoonie #ChronicallyIll #MEcfs #postcovid
3/
"There are days I will be struggling to get about with a pair of gutter crutches, and a few days later I’ll be managing with one, or using only a cane. It’s assumed by those who have little experience of #chronicillness or #disability that I must be getting “better,” therefore I must be able to do more, and I will continue to get better.
So what happens when, the next day, you’re back to using both crutches, or a wheelchair?"
#ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll #Disabled
4/
"Disabled people are expected to 1) cope cheerfully and positively accept their role as #disabled person; 2) pull ourselves together, minimizing the effect of #disability on our activities & colleagues; 3) strive to improve our condition & “get well” (if you think this seems diametrically opposed to expectation 1, you’re not the only one); 4) look after yourself with as little support as possible; 5) focus on recovery to return to or maintain employment"
@chronicillness @spoonies @disability
2/
"There are so many ways that an #illness or #disability can fluctuate, so many ways that the effects of such can change. But when you do have a #fluctuatingillness or disability, it often comes with many of the same pitfalls of a #hiddendisability. Judgement from those uneducated in the realities of disability, high expectations that are realistically beyond your capabilities, assumptions from others."
#chroniclife #hiddenillness #invisibleillness #Spoonies
#Spoonie #ChronicallyIll #MEcfs
3/
"There are days I will be struggling to get about with a pair of gutter crutches, and a few days later I’ll be managing with one, or using only a cane. It’s assumed by those who have little experience of #chronicillness or #disability that I must be getting “better,” therefore I must be able to do more, and I will continue to get better.
So what happens when, the next day, you’re back to using both crutches, or a wheelchair?"
#ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll #Disabled
2/
"There are so many ways that an #illness or #disability can fluctuate, so many ways that the effects of such can change. But when you do have a #fluctuatingillness or disability, it often comes with many of the same pitfalls of a #hiddendisability. Judgement from those uneducated in the realities of disability, high expectations that are realistically beyond your capabilities, assumptions from others."
#chroniclife #hiddenillness #invisibleillness #Spoonies
#Spoonie #ChronicallyIll #MEcfs
ME Research UK:
What is a leaky gut, and how might it affect the immune system and contribute to the symptoms of ME/CFS? A new study explores these questions and deepens our understanding of the immune system and gut in relation to the disease.
Read more:
https://www.meresearch.org.uk/leaky-gut-and-the-immune-system-in-me-cfs/@4183a04c #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
“Trial By Error: Call for Retraction of Cochrane Review from Science For ME; Overview of Viral Persistence in Long #Covid; (US) Senators United on #LongCovid” by David Tuller DrPH (September 7)
http://surl.li/kxbew@4183a04c #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @3a447f2a
#PwLC #PostCovidSyndrome #postcovid @166d98f6@e774e44d
#COVIDー19 #COVID19 #COVID_19 #SARSCoV2
8/
"MESSAGE FOR OTHERS
If I could speak to every newly diagnosed person, the first thing that I would say to them is that this is not your fault. This is a life-crushing disease, but you did not cause it. There are good researchers working hard to understand this poorly understood disease, and as long as they are doing the work, there is hope. (contd.)"
image via @MEActNet
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @4183a04chttps://assets.disabled.social/media_attachments/files/111/020/755/144/615/987/original/235d0b1af27a99c0.webp
9/
MESSAGE FOR OTHERS (contd.)
"Be very gentle with yourself. Be as kind to yourself as you would be to your closest friends if something this devastating happened to them. And remember that your life has value, no matter how constrained it may be. Try your absolute best to hold on."
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @4183a04c
Transcript: Q2 2023 AIM ImmunoTech Inc Earnings Call (Aug 16)
https://finance.yahoo.com/news/q2-2023-aim-immunotech-inc-040749819.html
This is the company that owns #Ampligen. There is quite a bit of discussion about the ongoing placebo-controlled trial for #postCOVID condition of fatigue #AMP518
#PwLC #PostCovidSyndrome #MEcfs #CFS #PwME @4183a04c #LongCovid @3a447f2a
8/
"MESSAGE FOR OTHERS
If I could speak to every newly diagnosed person, the first thing that I would say to them is that this is not your fault. This is a life-crushing disease, but you did not cause it. There are good researchers working hard to understand this poorly understood disease, and as long as they are doing the work, there is hope. (contd.)"
image via @MEActNet
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @4183a04chttps://assets.disabled.social/media_attachments/files/111/020/755/144/615/987/original/235d0b1af27a99c0.webp
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