Discover and read the best of Twitter Threads about #cfsme

Most recents (6)

Positive from a negative:
If you’re living #NEISvoid, #cfsme, or #LongCOVID life - and you have boty anxiety and a smart dog, #ServiceDog, #ESA, or #SDiT, here’s something that you can actually use as a way to benefit from a flare🙂
When I was stuck in bed with hardcore #LongCOVID flares, my SD could scent that I was sick, and would stay nearby...usually on the bed.

I’d luckily already had an “in case of bad days” setup to care for her, but I was often so sick I was only getting out of bed for the bathroom.
Being largely #poodle/just smart in general, she got used to the idea that “mom gets up, it means that she’s going to the bathroom.” And she would get up and go, often ahead of me, if not with me.

I DEFINITELY realized that this was a learning opportunity🙂
Read 5 tweets
.@TwitterA11y, people with disabilities need things to be accessible on BOTH ends.

The fact that the #AltText process is not easier on the writer’s end can make it difficult for #spoonie peeps & those with #cfsme to make posts that are accessible for the #VisuallyImpaired.
I know others are working on it, but with all of the algorithms out there, it should be possible to make viewable *predicted* text of what’s in a picture, so we can quickly approve it, or make edits.

That wouldn’t just “make life easier.” It’s about #accessibility & #autonomy.
#Disabled autonomy is more important than than many abled ppl realize.

So many things in our lives are based on the assumption that we “have someone to help us,” simply bc systems are falling short. It’s #ableist, & forces us to rely on others. We may not HAVE others available.
Read 5 tweets
There have been some really thoughtful comments since we shared our first #longCOVID rehabilitation paper on here and I wanted to take some time to transparently share 5 points about how our team has been tackling this complex and challenging problem - a thread (1/n)
1) Let's start with the "camp problem". Since the beginning we have noted the fact that #longCOVID shares similarities with #POTS, #dysautonomia, #CFSME, #MCAS, various #autoimmune conditions, et al. We are speaking with all of these communities and we are learning (2/n)
from some truly wonderful clinicians and patients, but we are not going to silo #longCOVID into just one of these conditions. In fact, as a group, our working hypothesis is that #longCOVID is unlikely to be one single is probably more like 5-10. (3/n)
Read 11 tweets
Press Release from NICE about its new draft #MECFS guidelines that are out for consultation…

“The draft guideline also highlights the importance of ensuring that people remain in their ‘energy envelope’ when undertaking activity of any kind”


Draft NICE guidance “recognizes that #MECFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms,particularly where there is the potential for an intervention to benefit some people but cause harm in others”
“Because of harms reported by people with #MECFS + the committee’s own experience of the effects when people exceed their energy limits...any programme based on fixed incremental increases in physical activity or exercise eg GET should not be offered for treatment of ME/#CFS
Read 13 tweets
“Doctors examining possible link between #chronicfatiguesyndrome and #COVID19: For many, chronic fatigue syndrome develops after a viral infection” by Dr Danielle Weitzer and Dr Christie Richardson…

#LongCovid #MEcfs #CFS #PostCovid #PVFS

“By this point, many people can identify symptoms of #COVID19 -- fever, fatigue, shortness of breath -- but fewer know that those can occur after a successful recovery* and closely resemble another illness: #chronicfatiguesyndrome

*I dislike using “recovery” in this way
“‘About 75 to 80% of #chronicfatiguesyndrome cases are post-viral in nature,’ estimated Dr. Mark VanNess, ‘The viral infection and following immune response are precipitating causes for long-term symptoms.’”

#LongCovid #PostViralSyndrome #PostViralFatigueSyndrome #MEcfs #CFS
Read 6 tweets
The International Consensus Criteria for ME states: “Misperceptions have arisen because the name ‘CFS’ and its hybrids #MECFS, #CFSME and CFS/CF have been used for widely diverse conditions”. #pwME #MyalgicEncephalomyelitis
@EmergeAus “Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name.”
@EmergeAus “Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”
Read 19 tweets

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