Anyone know of any stories of people with #LongCovid who were made worse by the Lightning Process? A journalist is looking at this issue. I shared with them some stories of people with ME/CFS in this scenario
@3a447f2a
#LongCovid #PwLC #postcovid #postcovid19 #LC
2/
This journalist has also now told me they would be interested in hearing of people with #LongCovid made worse by other programs that are somewhat similar e.g. Gupta. I talked to them for 20 minutes yesterday. An interesting & important project
@3a447f2a@4183a04c #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
NIH summary of recent paper:
“Prior infection with a common cold virus may predispose some people to develop Long #COVID after exposure to the #SARSCoV2 virus. The findings point to a potential marker that could help identify people at high risk of developing #LongCOVID”
(…) This “recall” response to OC43 leads to an inefficient overall response to SARS-CoV-2”
https://tinyurl.com/3v2fth4x@3a447f2a #PwLC #PASC #LC #postcovid
#COVIDー19 #COVID19 #COVID_19 #novid #CovidIsNotOver
🧵
“Post-Acute Sequelae of #SARSCoV2: More Than Deconditioning” Commentary.
Free
https://journal.chestnet.org/article/S0012-3692%2823%2900357-4/fulltext
“While deconditioning is commonly suggested to cause impaired systemic [oxygen extraction], this does not cause the degree of impairment observed in the aforementioned invasive CPET study. (contd)”
@3a447f2a
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid @e774e44d
#COVIDー19 #COVID19 #COVID #COVID_19
1/
2/
“Bedrest studies demonstrate only a mild impairment of systemic EO2 with deconditioning. Potential causes of impaired systemic EO2 include mitochondrial dysfunction and peripheral macroscopic or microscopic left-to-right shunts.”
@3a447f2a
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid
Digital holo-tomographic 3D maps of #COVID19 #microclots in blood to assess disease severity
Free:
https://tinyurl.com/4kkrs76s
“fewer microclots and platelet aggregates were detected in the plasma of healthy controls when compared to #COVID-19 donors”
#teamclots @3a447f2a
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid @e774e44d
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2
1/
2/
“Our findings highlight that label-free high-throughput microscopy can be used as a point-of-care technique to visualize and quantify the presence of microclots directly in plasma without the need for complicated sample preparation techniques.”
#microclots #TeamClots
#SARSCoV2 infection induces a long-lived pro-inflammatory transcriptional profile
Free:
https://tinyurl.com/269v3b43
“We discovered that SARS-CoV-2 infection leads to a prolonged alteration of the gene expression profile of circulating T, B and NK cells and monocytes”
@3a447f2a #LongCovid #PwLC #PostCovidSyndrome #LC #postcovid @166d98f6@e774e44d
#COVIDー19 #COVID19 #COVID #COVID_19 @e3942352 #novid #CovidIsNotOver
Plasma proteomics show altered inflammatory and mitochondrial proteins in patients with neurologic symptoms of post-acute sequelae of #SARSCoV2 infection
https://tinyurl.com/4nxyye9y
One of the authors Dr Klausner on the 🐦 site:
“Our collaborative work on what causes #LongCovid suggests damage to the mitochondria & immune system underly persistent #brainfog”
@3a447f2a
#PwLC #PostCovidSyndrome #LC #postcovid @e774e44d #COVIDー19 #COVID19 #COVID #COVID_19 #novid
1/
2/
“… we discovered a correlation between [neuro-#PASC] patient’s lower subjective impression of recovery to pre-#COVID19 baseline with an increase in the concentration of the oxidative phosphorylation protein COX7A1, which was also associated with neurologic symptoms & fatigue, as well as impairment in QoL & cognitive dysfunction”
@3a447f2a
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid @166d98f6@e774e44d
#COVIDー19 #COVID #COVID_19 #SARSCoV2 #novid
NPR: Unraveling #LongCovid — Here's what scientists who study the illness want to find out
https://tinyurl.com/a8ravk5j
Researchers & patient advocates who participated at a long #COVID19 conference in USA last month share some findings & current hypotheses from the field.
"All of those involved in research stress they don't expect just one answer to long #COVID. It's likely many of these theories about its underlying cause are interrelated”
@3a447f2a #PwLC #LC #postcovid
Yale School of Medicine Post-Acute Infection Syndromes Will Be the Focus of New YSM Center
https://tinyurl.com/5d38ua2r
On the newly launched Center for Infection & Immunity (CII) at Yale created by Akiko Iwasaki, PhD, which will investigate ME together with #LongCOVID and #posttreatmentLymedisease
@4183a04c #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @3a447f2a
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid #longlyme #lyme
1/
2/
Dr. Iwasaki says: "Post-acute infection syndromes have historically been ignored. They've been going on for decades - or maybe hundreds of years - but we haven't been paying attention. Our center is uniquely positioned to tackle these diseases because of our building expertise from #LongCOVID and our many collaborations across different disciplines".
@4183a04c@3a447f2a #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
New Blood Test For #ChronicFatigueSyndrome Has 91% Accuracy
On the preliminary results from a study by Jiabao Xu et al on a blood cell-based test for ME/CFS. "The blood test differentiates between the properties of a type of blood cell called peripheral blood mononuclear cells (PBMCs) in people with an without ME/CFS, using a technique called Raman spectroscopy and an artificial intelligence (AI) tool"
https://tinyurl.com/59fwuvha@4183a04c
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis
L”Association Française du Syndrome de Fatigue Chronique (ASFC) a édité un petit guide du pacing, conçu pour les malades
https://www.asso-sfc.org/asfc-actualites-details-478.php?zan_id=478
#SFC @4183a04c
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @3a447f2a
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid
Belle and Sebastian's Stuart Murdoch to Publish Debut Novel
Musician and ME-sufferer Stuart Murdoch will publish a novel titled "Nobody's Empire" next year. "Part memoir and part fiction, the novel is set in Glasgow and California in the early 1990s and followed a character searching for "a new-world reinvention" after his hospitalisation with chronic fatigue syndrome".
https://tinyurl.com/7jpncr73@4183a04c
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Trude Schei from the Norwegian ME Association has written an opinion piece urging better care for severe ME patients. Patients need to pay out of their own pocket or raise money in order to access care at Røysumtunet, the only institution with an offer for #severeME, instead of receiving support for a stay from their municipalities
English translation:
https://shorturl.at/boqEG@4183a04c
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Interesting 20-minute David Tuller DrPH interview with health, science & data journalist Betsy Ladyzhets about NIH's Flawed $1.2 Billion RECOVER Program for Long #Covid
She has written a critical, investigative report for STAT on the RECOVER program
https://shorturl.at/pqBJR@3a447f2a
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid @166d98f6@e774e44d
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @e3942352 #novid #CovidIsNotOver
2/
“Stories like Zimmernan’s—illness, improvement, exercise, crash—are common in the Long COVID world. And they highlight what many researchers, patients, and advocates say is one of the most powerful tools for managing, and potentially even preventing, Long COVID: rest.”
@3a447f2a
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid @166d98f6@e774e44d
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @e3942352 #novid #CovidIsNotOver
3/
“For years, clinicians tried to treat ME/CFS patients by gradually increasing their physical activity levels - since been shown to be ineffective, often harmful”
@3a447f2a@166d98f6@e774e44d@e3942352@4183a04c
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME
Time: Why You Should Rest - a Lot - If You Have #COVID19 (September 2022)
Informative article on PEM and pacing with among others Jamie Seltzer from #MEAction.
https://time.com/6215346/covid-19-rest-helps/
“I had no idea that I should try to rest as hard as I needed to rest,” she says.
@3a447f2a
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid @166d98f6@e774e44d
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @e3942352 #novid #CovidIsNotOver
1/
2/
“Stories like Zimmernan’s—illness, improvement, exercise, crash—are common in the Long COVID world. And they highlight what many researchers, patients, and advocates say is one of the most powerful tools for managing, and potentially even preventing, Long COVID: rest.”
@3a447f2a
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid @166d98f6@e774e44d
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @e3942352 #novid #CovidIsNotOver
Washington Post article on in-house NIH research: “She wrote to a scientist about her fatigue. It inspired a breakthrough” by
@17f259dchttps://wapo.st/3Pem0G4
“Nine out of 14 had similar overabundance of WASF3 as Twinam, and, on average, the [#MEcfs] group’s levels of this protein were higher than that of healthy volunteers”
Mentions a drug trial is planned
@4183a04c
#CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Solve ME/CFS Initiative:
"Our flagship research and advocacy journal, The Chronicle, has arrived! This special edition features key resources from our website that community members can utilize as they navigate their journeys with #MECFS or #LongCovid."
https://solvecfs.org/wp-content/uploads/2023/09/Solve-Summer-2023-Digital-Resources-Chronicle.pdf@4183a04c #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @3a447f2a
#PwLC #LC #postcovid
7/
“(Contd) Ongoing resistance to the paradigm shift only ensures that patients will continue to be offered inadequate & possibly dangerous therapies. Recent reports from patient support groups suggest that many health care services across England are not yet aligned with the new ME/CFS guideline, still offering treatments that are now disfavored”
@4183a04c@3a447f2a #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #ME #CFSME #CFIDS
#SEID #NeuroME
8/
“A new NIH institute or center for post-infectious illness is a promising prospect. However, any such initiative is unlikely to happen quickly, & obtaining actionable results would take even longer. In the interim, we believe medical & public health authorities should not wait for the paradigm to shift by itself. Instead, they must push the paradigm & help ensure its onward passage against the forces of resistance & revanchism”
@4183a04c@3a447f2a #MEcfs #CFS #MyalgicE #PwME
The Science Times
Leading UK Doctors and Charities “Livid” as Covid 19 Inquiry Excludes #LongCovid Representation in Latest Module
"Module 4 of the Covid-19 Inquiry opens this week & will examine the roll out of vaccines, therapeutics & anti-viral treatment across the UK”
https://tinyurl.com/28h2dvek@3a447f2a #PwLC #PostCovidSyndrome #LC #postcovid @166d98f6@e774e44d
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @e3942352 #novid #CovidIsNotOver
1/
2/
“By not investigating #LongCovid in Module 4, the Inquiry is in effect saying there is no need to investigate pharmaceutical interventions which could prevent & treat Long #Covid. The exclusion of the Long Covid Groups dismisses the profound impact that Long Covid has had, & continues to have, on many people in the UK."
@3a447f2a
#PwLC #PostCovidSyndrome #LC #postcovid @166d98f6@e774e44d
#COVID19 #COVID_19 #SARSCoV2 @e3942352 #novid #CovidIsNotOver
6/
“Although paradigms are bound to shift when new knowledge contradicts prior beliefs, the resistance phase can be highly troublesome. This is especially the case when purportedly effective treatments arising out of poor-quality science carry a risk to human welfare. In the current context, psycho-behavioral approaches to treatment have been shown to be not only flawed but likely harmful by triggering the serious relapses that characterize PEM (contd)” @4183a04c@3a447f2a #mecfs
7/
“(Contd) Ongoing resistance to the paradigm shift only ensures that patients will continue to be offered inadequate & possibly dangerous therapies. Recent reports from patient support groups suggest that many health care services across England are not yet aligned with the new ME/CFS guideline, still offering treatments that are now disfavored”
@4183a04c@3a447f2a #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #ME #CFSME #CFIDS
#SEID #NeuroME
5/
"(Contd.) The converse is clear as well when critics frame research into the biology and pathophysiology of ME/CFS or #longCOVID as unnecessarily expensive. If you’re reluctant to spend significant resources addressing a new problem, ignoring its potential significance is an understandable strategy."
@4183a04c@3a447f2a #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
6/
“Although paradigms are bound to shift when new knowledge contradicts prior beliefs, the resistance phase can be highly troublesome. This is especially the case when purportedly effective treatments arising out of poor-quality science carry a risk to human welfare. In the current context, psycho-behavioral approaches to treatment have been shown to be not only flawed but likely harmful by triggering the serious relapses that characterize PEM (contd)” @4183a04c@3a447f2a #mecfs
4/
"This reality also helps explain, once again, the staying power of old ideas. Short-term and low-cost interventions such as GET and CBT are attractive not because of their evidence base, which has been exposed as flimsy and unconvincing, but rather because of their seemingly plausible and easily replicated approach to a very complex scientific and public health issue. (contd)”
@4183a04c@3a447f2a #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
5/
"(Contd.) The converse is clear as well when critics frame research into the biology and pathophysiology of ME/CFS or #longCOVID as unnecessarily expensive. If you’re reluctant to spend significant resources addressing a new problem, ignoring its potential significance is an understandable strategy."
@4183a04c@3a447f2a #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
6/
"7. “I’m in more pain than someone could even imagine. I wouldn’t wish this pain on my worst enemies. I don’t like to complain to those around me because if I did, I’d be complaining 24/7 and I don’t want to be ‘annoying’ or ‘a burden’ to anyone.”
@3567457b@04c95879 #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll #ChronicPain #ChronicPainWarrior #ChronicPainAwareness
7/
8. “I’m on the verge of losing it at everyone because everything seems so loud, like it’s way louder than normal. And it’s so annoying it makes me angry. Like even someone drinking a drink seems like they have megaphone at their throat.”
@3567457b@04c95879 #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll
3/
"(Contd.) Moreover, when tracking treatment outcomes with objective measures—such as physical endurance tests, actometer data, records of workplace participation, or analyses of dependence on social benefits—the research generally showed minimal or null effects for both GET and CBT.”
@4183a04c@3a447f2a #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME
4/
"This reality also helps explain, once again, the staying power of old ideas. Short-term and low-cost interventions such as GET and CBT are attractive not because of their evidence base, which has been exposed as flimsy and unconvincing, but rather because of their seemingly plausible and easily replicated approach to a very complex scientific and public health issue. (contd)”
@4183a04c@3a447f2a #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
2/
“These assessments highlighted the many key flaws that were endemic in the [GET/CBT/rehab] research, including the confounding of unblinded trials by reliance on solely subjective outcome measures, such as patients’ self-ratings about their health status on questionnaires. This combination of study design features meant that findings were impacted by an unknowable level of bias. (Contd)”
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@4183a04c@3a447f2a
3/
"(Contd.) Moreover, when tracking treatment outcomes with objective measures—such as physical endurance tests, actometer data, records of workplace participation, or analyses of dependence on social benefits—the research generally showed minimal or null effects for both GET and CBT.”
@4183a04c@3a447f2a #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME
2/
“These assessments highlighted the many key flaws that were endemic in the [GET/CBT/rehab] research, including the confounding of unblinded trials by reliance on solely subjective outcome measures, such as patients’ self-ratings about their health status on questionnaires. This combination of study design features meant that findings were impacted by an unknowable level of bias. (Contd)”
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@4183a04c@3a447f2a
5/
6. “Some days it takes all day to get enough energy to shower, so around 3 p.m. I start to get terrible anxiety thinking someone will come to my door and think I’m lazy or dirty because the laundry is on the sofa, dishes in the sink and I’m unshowered and in bed in the middle of the day!”
@3567457b@04c95879 #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll
6/
"7. “I’m in more pain than someone could even imagine. I wouldn’t wish this pain on my worst enemies. I don’t like to complain to those around me because if I did, I’d be complaining 24/7 and I don’t want to be ‘annoying’ or ‘a burden’ to anyone.”
@3567457b@04c95879 #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll #ChronicPain #ChronicPainWarrior #ChronicPainAwareness
4/
"4. 'Brain fog makes me feel so out of it some days; even the simplest thing is so hard to hang onto and comprehend.'"
#BrainFog #FoggyBrain
@3567457b@04c95879 #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll
5/
6. “Some days it takes all day to get enough energy to shower, so around 3 p.m. I start to get terrible anxiety thinking someone will come to my door and think I’m lazy or dirty because the laundry is on the sofa, dishes in the sink and I’m unshowered and in bed in the middle of the day!”
@3567457b@04c95879 #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll
3/
"2. “My housework falls behind, my washing falls behind, my sorting of things and objects falls behind. I want to have a clean and tidy house but find that dumping things in piles has been the only thing I can do now. I’m constantly tired of battling a fight I don’t think I’m ever going to win.”
@3567457b@04c95879 #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll
4/
"4. 'Brain fog makes me feel so out of it some days; even the simplest thing is so hard to hang onto and comprehend.'"
#BrainFog #FoggyBrain
@3567457b@04c95879 #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll
ME Association
ME/ #CFS Research Published 5 – 11 September 2023
There have been 9 new ME/CFS studies & 26 new #LongCovid
studies this week.
We have also included the references which were missed in the previous
week
We have highlighted one of the #MECFS studies in more detail below:
Paper 4 this week looks at the effect of end-tidal CO2 on
cerebral blood flow during orthostatic stress
https://meassociation.org.uk/z3cz
#pwME #MyalgicE #MyalgicEncephalomyelitis #PostCovid #research
2/
"1. 'I procrastinate showers because they’re just too much work, especially now with a central line. I don’t brush my hair between showers because it kills my arms, and my muscles get extremely fatigued and hurt. I really need help but hate asking for help and feeling like a burden.”
@3567457b@04c95879 #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
3/
"2. “My housework falls behind, my washing falls behind, my sorting of things and objects falls behind. I want to have a clean and tidy house but find that dumping things in piles has been the only thing I can do now. I’m constantly tired of battling a fight I don’t think I’m ever going to win.”
@3567457b@04c95879 #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll
2/
"1. 'I procrastinate showers because they’re just too much work, especially now with a central line. I don’t brush my hair between showers because it kills my arms, and my muscles get extremely fatigued and hurt. I really need help but hate asking for help and feeling like a burden.”
@3567457b@04c95879 #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
5/
"Spoon delegation isn’t always about the things you have to get done on your task list. Sometimes it’s about making the decision to put those spoons toward an activity you enjoy for your mental health — even if it means you’re going to be a little smelly — that’s what deodorant and body sprays are for!"
@3567457b@04c95879@4183a04c@3a447f2a #Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
6/
"But when those plans involve other people, the stress and guilt felt by having to tell them you don’t feel well enough to participate can be overwhelming."
@3567457b@04c95879@4183a04c@3a447f2a #ChronicIllnesses
#Spoonies
#Spoonie
4/
"On the days that I decide I don’t have the recovery time or overall energy to take a shower, I give myself a baby wipe bath (which is just wiping myself down with a bunch of baby wipes), apply dry shampoo to my hair, and throw a little cold water on my face."
@3567457b@04c95879@4183a04c@3a447f2a #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
5/
"Spoon delegation isn’t always about the things you have to get done on your task list. Sometimes it’s about making the decision to put those spoons toward an activity you enjoy for your mental health — even if it means you’re going to be a little smelly — that’s what deodorant and body sprays are for!"
@3567457b@04c95879@4183a04c@3a447f2a #Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
3/
"Now that I’m living with #chronicillness, I have to put serious consideration into much of what I choose to do throughout the day because it will have an immediate effect on Current Leslie, as well as risk having an impact on Future Leslie."
#chroniclife #Spoonielife #Spoonie @3567457b@04c95879@4183a04c@3a447f2a
4/
"On the days that I decide I don’t have the recovery time or overall energy to take a shower, I give myself a baby wipe bath (which is just wiping myself down with a bunch of baby wipes), apply dry shampoo to my hair, and throw a little cold water on my face."
@3567457b@04c95879@4183a04c@3a447f2a #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
2/
4. Deciding how to respond to “I hope you feel better soon!”
5. Deciding if you’re actually able to do ‘The Thing.’
6. Deciding how much social interaction you can handle.
7. Deciding when to ask for help.
#chronicillness #chroniclife #Spoonielife #Spoonies #Spoonie @3567457b@04c95879@4183a04c #MyalgicEncephalomyelitis #MEcfs #CFS #PwME @3a447f2a #LongCovid #PwLC #postcovid #postcovid19 #LC
3/
"Now that I’m living with #chronicillness, I have to put serious consideration into much of what I choose to do throughout the day because it will have an immediate effect on Current Leslie, as well as risk having an impact on Future Leslie."
#chroniclife #Spoonielife #Spoonie @3567457b@04c95879@4183a04c@3a447f2a
2/
4. Deciding how to respond to “I hope you feel better soon!”
5. Deciding if you’re actually able to do ‘The Thing.’
6. Deciding how much social interaction you can handle.
7. Deciding when to ask for help.
#chronicillness #chroniclife #Spoonielife #Spoonies #Spoonie @3567457b@04c95879@4183a04c #MyalgicEncephalomyelitis #MEcfs #CFS #PwME @3a447f2a #LongCovid #PwLC #postcovid #postcovid19 #LC
Info in English on new research funding initiative in Germany announced by the Federal Ministry of Education & Research (BMBF)
“‘Guideline for the promotion of interdisciplinary collaborations to research the pathomechanisms of ME/CFS’”
https://www.meresearch.org.uk/german-guideline-promotes-interdisciplinary-me-cfs-research/@4183a04c
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE @mecfs_de@.gup.pe
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