Sugar Bean
@sugarbean.bsky.social
Severe ME/CFS, POTS, Raynaud’s, MCAS, MCS slice of life.
I just need a place to vent. I’ll probably swear.
I just need a place to vent. I’ll probably swear.
These guys are the real deal. Both are brilliant and have helped this community so much. Please consider donating to help further research for #MECFS ! What if Dr. Davis found the cure for this illness?
From Ronald W, Davis, PhD.
- HOPE FOR 2025 -
I am very optimistic that soon the major mechanisms that initiate the disease will be found. This will allow a concerted effort to reverse the process and find a cure….
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...
#MECFS #LongCovid
- HOPE FOR 2025 -
I am very optimistic that soon the major mechanisms that initiate the disease will be found. This will allow a concerted effort to reverse the process and find a cure….
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...
#MECFS #LongCovid
Ron Davis's message of hope for 2025 and plea for help
I think of you all every day as I work to untangle the complex molecular basis of this horrific disease…I am very optimistic that soon the major mechanisms that initiate the disease will be found. Thi...
www.whitneydafoe.com
January 18, 2025 at 11:54 AM
These guys are the real deal. Both are brilliant and have helped this community so much. Please consider donating to help further research for #MECFS ! What if Dr. Davis found the cure for this illness?
If anyone tells you that in order to heal from MECFS you have to “believe you can” they’re selling bs. You’d be hard pressed to find a group of sufferers who have more resolve and desire to be healthy.
December 26, 2024 at 1:51 PM
If anyone tells you that in order to heal from MECFS you have to “believe you can” they’re selling bs. You’d be hard pressed to find a group of sufferers who have more resolve and desire to be healthy.
December 1, 2024 at 7:06 AM
If I could be healthy I think I’d be sad at first because I’d finally be able to be in the world and see all the milestones I had missed.
I’ll never get them back.
#MECFS #SevereMECFS
I’ll never get them back.
#MECFS #SevereMECFS
December 1, 2024 at 6:15 AM
If I could be healthy I think I’d be sad at first because I’d finally be able to be in the world and see all the milestones I had missed.
I’ll never get them back.
#MECFS #SevereMECFS
I’ll never get them back.
#MECFS #SevereMECFS
I wanna run
I wanna go on hikes
I wanna shop all day
I wanna work and cook my dinner
I wanna make love
I wanna wear perfume
I wanna clean my house
I wanna do art and music all day
I wanna sleep and feel better
I wanna not have MECFS
I wanna go on hikes
I wanna shop all day
I wanna work and cook my dinner
I wanna make love
I wanna wear perfume
I wanna clean my house
I wanna do art and music all day
I wanna sleep and feel better
I wanna not have MECFS
December 1, 2024 at 6:11 AM
I wanna run
I wanna go on hikes
I wanna shop all day
I wanna work and cook my dinner
I wanna make love
I wanna wear perfume
I wanna clean my house
I wanna do art and music all day
I wanna sleep and feel better
I wanna not have MECFS
I wanna go on hikes
I wanna shop all day
I wanna work and cook my dinner
I wanna make love
I wanna wear perfume
I wanna clean my house
I wanna do art and music all day
I wanna sleep and feel better
I wanna not have MECFS
November 15, 2024 at 3:55 AM
The amount of symptoms between LongCovid and MECFS are huge, to the point that many people (including myself) think they are basically the same illness. You would THINK that researchers would be looking at the MECFS data. But no, it’s the same studies, over and over.
June 20, 2024 at 10:02 PM
The amount of symptoms between LongCovid and MECFS are huge, to the point that many people (including myself) think they are basically the same illness. You would THINK that researchers would be looking at the MECFS data. But no, it’s the same studies, over and over.
The common ways of seeking support/connection don’t work for me as someone with long-term severe ME/CFS. Therapists, online friends, support groups, even the suicide hotline all didn’t work for me. I sure tried. What I know is that I’m on my own, and that’s just how it is. Here are my experiences👇
May 6, 2024 at 7:55 AM
The common ways of seeking support/connection don’t work for me as someone with long-term severe ME/CFS. Therapists, online friends, support groups, even the suicide hotline all didn’t work for me. I sure tried. What I know is that I’m on my own, and that’s just how it is. Here are my experiences👇
Severe MECFS means intense isolation. It means not being able to have irl friendships. Relying on caregivers for your only face to face social interaction. MECFS means being inside, and in bed all day. Same view. Same sounds. Same loneliness. Same day. Over and over and over.
April 25, 2024 at 10:46 AM
Severe MECFS means intense isolation. It means not being able to have irl friendships. Relying on caregivers for your only face to face social interaction. MECFS means being inside, and in bed all day. Same view. Same sounds. Same loneliness. Same day. Over and over and over.
@tomkindlon.bsky.social thank you for putting so much work into sharing the research info. Reading about the latest discoveries gives me hope!
April 8, 2024 at 9:43 PM
@tomkindlon.bsky.social thank you for putting so much work into sharing the research info. Reading about the latest discoveries gives me hope!
I went from Severe to Very Severe according to this chart… sigh.
This assessment tool is generating a lot of discussion elsewhere
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
2/
Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time.
from:
www.frontiersin.org/journals/imm...
#MEcfs #CFS #PwME #SevereME #SevereMECFS #SevereCFS #VerySevereME
Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time.
from:
www.frontiersin.org/journals/imm...
#MEcfs #CFS #PwME #SevereME #SevereMECFS #SevereCFS #VerySevereME
April 8, 2024 at 9:40 PM
I went from Severe to Very Severe according to this chart… sigh.
Why are some people so hell bent on insisting #MECFS is a psychosomatic disorder when it isn’t? Like why? What are you gaining by harassing sick people? Why are you trying to gain from them?
March 19, 2024 at 1:20 AM
Why are some people so hell bent on insisting #MECFS is a psychosomatic disorder when it isn’t? Like why? What are you gaining by harassing sick people? Why are you trying to gain from them?
I had an unfortunate interaction with someone who has #LongCovid recently. They took the opportunity to privately message me and trauma dump- by repeatedly telling me how they wanted to un al*ve themselves.
March 9, 2024 at 8:38 PM
I had an unfortunate interaction with someone who has #LongCovid recently. They took the opportunity to privately message me and trauma dump- by repeatedly telling me how they wanted to un al*ve themselves.
THIS JUST IN: Some #MECFS and #LongCovid researchers who shun all established research and decide to start medicine from the beginning make the groundbreaking discovery that these two illnesses at one point have low iron! GASP! That means: tHe LoW iRoN CAusEs iLLnesS???
March 5, 2024 at 9:51 PM
THIS JUST IN: Some #MECFS and #LongCovid researchers who shun all established research and decide to start medicine from the beginning make the groundbreaking discovery that these two illnesses at one point have low iron! GASP! That means: tHe LoW iRoN CAusEs iLLnesS???
Oh my gosh #LongCovid and #MECFS is caused by low iron levels??? Why didn’t anyone who has ever had this illness try just taking some IRON??? Like duh! I’m cured now!!!
ORRRR we’ve already tried everything that’s out there, for fucks sake.
ORRRR we’ve already tried everything that’s out there, for fucks sake.
March 5, 2024 at 9:46 PM
Oh my gosh #LongCovid and #MECFS is caused by low iron levels??? Why didn’t anyone who has ever had this illness try just taking some IRON??? Like duh! I’m cured now!!!
ORRRR we’ve already tried everything that’s out there, for fucks sake.
ORRRR we’ve already tried everything that’s out there, for fucks sake.
Happy Valentine’s Day to those who are too physically ill to have or maintain romantic or platonic relationships. You’re not the only one! #MECFS #CFS #POTS #chronicillness
February 14, 2024 at 10:02 PM
Happy Valentine’s Day to those who are too physically ill to have or maintain romantic or platonic relationships. You’re not the only one! #MECFS #CFS #POTS #chronicillness
When was it decided that I was the one that would be taken care of? I don’t want that. *I* want to be the one to take care of everyone else. But I can’t. #MECFS #CFS #POTS #chronicillness
February 14, 2024 at 9:16 PM
When was it decided that I was the one that would be taken care of? I don’t want that. *I* want to be the one to take care of everyone else. But I can’t. #MECFS #CFS #POTS #chronicillness
I have an elderly family member who needs help right now, and I am unable to assist my parents with that in any way except for moral support from my bed. I am a DOER and with #MECFS and #POTS, I can’t and I feel impotent. *I* want to be taking care of everyone, not the other way around.
February 14, 2024 at 9:11 PM