tomkindlon

tomkindlon, 2 days ago

2/

Paper title: Vaccination after developing long COVID: impact on clinical presentation, viral persistence and immune responses

@longcovid @covid19

tomkindlon, 3 days ago

2/

“My talk at Cambridge was an effort to categorize some of these practices and provide key examples of each. The flaws I discuss generally lead to results that distort and misrepresent the true nature of what is happening with patients." - David Tuller DrPH

#MUS #FND

@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE

tomkindlon, 5 days ago

2/

A history of chronic fatigue syndrome was derived from a "Yes" response to the question, "Have you ever been told by a doctor or other healthcare professional that you had Chronic Fatigue Syndrome (CFS/ME) or Myalgia Encephalomyelitis (ME)?"

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps

tomkindlon, 6 days ago

ADAPTATIONS

https://www.disabilityathome.org/adaptations/

@chronicillness @spoonies @disability @mecfs
#Disability #chronicillness #chroniclife #Spoonielife #Spoonie

tomkindlon, 7 days ago

2/

"I see it almost daily. In the health communities I’m in, someone will say 'I need to get a disabled placard but I’m afraid to.' I see the images of awful notes left on the car of someone who uses a placard. You can find examples here, here, here and here. I could keep going"

@chronicillness @spoonies @disability @mecfs @longcovid

tomkindlon, 7 days ago

3/

"My doctor signed it without question. I still was not comfortable with the term “disabled” then and I was still trying to pretend I could physically do what I was longer able to do. “Passing” as able-bodied was significantly easier than trying to live with disability (or so I thought at the time), and I was coasting on denial as long as I could."

@chronicillness @spoonies @disability @mecfs @longcovid #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness

tomkindlon, 7 days ago

4/

"But I was wrong. I was and am disabled. I got the [parking] placard and ended up using it every day because it was a life saver. I wished I had gotten it sooner when I needed it, long before I finally talked to my doctor about it."

#chronicillness #chroniclife #Spoonies
@chronicillness @spoonies @disability @mecfs @longcovid

tomkindlon, 7 days ago

5/

"I imagine there are a variety of reasons people leave notes on cars or make discriminatory comments to the disabled...they may assume all disabilities are visible and that only individuals who require a mobility aid qualify as disabled."

#Hiddendisability #Hiddendisabilities
@chronicillness @spoonies @disability @mecfs @longcovid

tomkindlon, 7 days ago

6/
"When someone leaves a note on a car or makes a comment, they are making rash judgments about someone they’ve never even met and enacting a gross injustice on someone who faces daily obstacles already.

This needs to stop."

#Butyoudontlooksick #Invisibledisability #Spoonie
@chronicillness @spoonies @disability @mecfs @longcovid

tomkindlon, 6 days ago

7/

"1. Most #disabilities and #chronicconditions are invisible. Often, you cannot “see” kidney disease, cognitive disabilities, neurological conditions, cancer, prosthetic limbs, etc. All of these and more qualify as disabilities, and these individuals are allowed access to a disabled placard to make their lives and the world that much easier to navigate."

@chronicillness @spoonies @disability @mecfs @longcovid #Hiddendisability
#Hiddendisabilities
#hiddenillness
#invisibleillness

tomkindlon, 6 days ago

8/

"2. Police officers, parking attendants, etc. can ask someone to show them the permit people are required to carry when they use a placard. Other people do not need to enact their own form of vigilante justice. There is a system in place to make sure that those who use the placards are permitted to use them."

@chronicillness @spoonies @disability @mecfs @longcovid #Chronicdisease
#Chronicdiseases
#Hiddendisability
#Hiddendisabilities

tomkindlon, 6 days ago

9/

"4. If someone would like to help those with #disabilities, there are better ways to do this than by leaving notes on someone’s car or making disdainful comments... You can spread the word that many disabilities are invisible and learn more about why disability and illness are often considered “invisible.”..."

#chronicillness #Spoonie #Hiddendisabilities #Invisibledisability

@chronicillness @spoonies @disability @mecfs @longcovid

tomkindlon, 5 days ago

10/

"Those with #disabilities face hurdles every day the able-bodied cannot fathom. If you are concerned that the #disabled are getting a “privilege” that is somehow “undeserved,” you are entitled to your opinion but please don’t act on it."

#chronicillness #Spoonie #Hiddendisabilities #Invisibledisability
@chronicillness @spoonies @disability @mecfs @longcovid

tomkindlon, 8 days ago

2/
The University in Bergen has written an article about the new #MEcfs research funding:

https://www.s4me.info/threads/news-from-scandinavia.647/page-89#post-494955
or
https://www.uib.no/med/164929/uib-får-11-millioner-i-støtte-til-me-forskning

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

tomkindlon, 10 days ago

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".

@mecfs @longcovid #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

tomkindlon, 11 days ago

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)”

@mecfs @longcovid #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

tomkindlon, 11 days ago

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."

@mecfs @longcovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

tomkindlon, 11 days ago

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)” @mecfs @longcovid #mecfs

tomkindlon, 11 days ago

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”

@mecfs @longcovid #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #ME #CFSME #CFIDS
#SEID #NeuroME

tomkindlon, 11 days ago

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”

@mecfs @longcovid #MEcfs #CFS #MyalgicE #PwME

tomkindlon, 11 days ago

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.”

@chronicillness @spoonies #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll #ChronicPain #ChronicPainWarrior #ChronicPainAwareness

tomkindlon, 11 days ago

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.”

@chronicillness @spoonies #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll

tomkindlon, 9 days ago

8/

13. “I’m often so tired that even taking a deep breath is exhausting. I will even put off going to the bathroom for as long as possible because just walking the few feet from my couch to the restroom feels like walking a mile. My whole house feels like it triples in size on my bad days and everything is so far away.”

@chronicillness @spoonies #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll

tomkindlon, 8 days ago

9/

14. “Having two big days in a row wipes me out, and I need a quiet day with little interaction, which is hard for my son to understand as he just wants to talk to me.”

#Spoonielife #hiddenillness #Spoonies #Spoonie @chronicillness @spoonies

tomkindlon, 8 days ago

10/

“I don’t admit that I feel lonely. CFS can be such a lonely disease because when you are sleeping constantly you are separating yourself from the rest of the world. And the pain is so segregating — you own it, no one else is sharing that pain, you are alone. It is hard to feel connected to others when you crash for days.”

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME @chronicillness @spoonies