dSavannah

The only thing that helped my brain fog was the amino acid Phosphatidyl Serine. (Some ppl do better with the -choline version.)

If I forget, I can tell my brain is off.

It’s the only supplement I recommend whole heartedly!

YouTube video by David M Tuller Interview with Professor Chris Ponting about the DecodeME results.

#DecodeME A brilliant interview with Chris Ponting by @davetuller1.bsky.social

Chris gave new details, including:
- They got feedback on a draft of the pre-print from independent researchers, to help them test their findings and improve the manuscript.
1/

youtu.be/CGUmcB_YIaA?...

38 minutes of discussion and phone-in about the #DecodeME genetic results on the Natasha Devon Show on LBC yesterday.

www.youtube.com/watch?app=de...

@natashadevon.bsky.social
@lbc.co.uk

#mecfs #MyalgicEncephelomyelitis
Recorded by Broken Battery

Possible genetic clues to ME/chronic fatigue syndrome identified in massive study DNA analysis of more than 15,500 people with the debilitating condition identifies eight tentative “genetic signals”

Science magazine’s coverage of the DecodeME initial results : www.science.org/content/arti...

Oh my word! @naomiwhitt.bsky.social captures all that needs to be said about Kara and her place in limbo in this so insightful piece in @thesicktimes.org yesterday. My tribute to Naomi - her writing is head and shoulders above anything else I've read this weekend.
#KaraJane #InLimbo #MEAssociation

Severe ME Artists Project 2025 #MEAction is excited to present this year's Severe ME Artists project in recognition of Severe ME Awareness Day!

It usually takes me about an hour to be able to get out of bed when I wake up. And that's on a good day.

Thank you Chelsea for letting me share.

Be sure to visit the @meactnet.bsky.social Severe ME Artists Project 2025 to see more art created by those of us suffering from MEcfs. 5/5

because we all say a lot how it’s like our batteries just don’t ever fully charge, and sometimes [they’re at] at 0%. And then it’s like, ‘ah what if we just sometimes feel we don’t have them batteries at all?’.”

Which is definitely my experience with MEcfs. Sometimes I just can’t move. 4/

Regarding her drawing, she told me “I think I just felt particularly awful that day, and just utterly drained and like the life had been sucked out of me, so the thought of batteries being taken out of me was floating round in my head, 3/

Chelsea lives in the U.K. and is in one of my MEcfs support groups. She doesn’t consider herself severe, more on the worse end of moderate, and said “It is a hard thing to be able to come to terms with; I was severe for a couple of months a while back and I was in denial about it at the time.” 2/

A drawing of a naked human on the ground, folded with their legs under them and their arms stretched behind them. A section of their back is missing, with springs coming out of it. In the foreground are two batteries and a battery cover, as if they had spontaneously sprung out of the person’s body.

Today, August 8, is #SevereMEday. (Post 3 of 3)

This drawing by Chelsea Buivids so perfectly captures our experience as MEeps. 1/

I remain one of the #MillionsMissing
#SevereME #pwME (#MEep) #UnitedForME
#MEcfs #MyalgicEncephalomyelitis
#CanYouSeeMeNow
#ChronicIllness #Spoonie #InvisibleIllness

DSavannahRambles Today, 8/8, is Severe ME Day (and coincidentally, my 16th wedding anniversary). I’ve been ill for over a decade now, and until this year, I never considered myself “severe”. Close to it - on the...

(BTW, although the gallery can be viewed on mobile, it's best on web to get the full impact.)

*Apparently I admitted it last year, but it's only showing up in my memories for my FB page, not my FB profile, and I of course completely forgot. 8/8

Severe ME Artists Project 2025 #MEAction is excited to present this year's Severe ME Artists project in recognition of Severe ME Awareness Day!

To see the other pieces submitted to #MEAction Severe ME Artists Project 2025, please visit the gallery site. I especially love the first piece of art, "12ME: 21 of 90 Artists", the peacock with colorful spoons instead of feathers. 7/

From the International Consensus Criteria (ICC) for MEcfs, the only symptom I don't have is swollen lymph nodes.

I could go on, but it's awfully depressing & I'm awfully tired. (You can also read more about my experience with MEcfs by visiting my long-languished blog.) 6/

Home - funcap.no FUNCAP is used to assess functional capacity in patients with diseases where post exertional symptom exacerbation (PEM, PENE, PESE) is present

(I fall more on the severe-moderate side than severe-severe side.)

More proof:

My FUNCAP (Functional Capacity) score is 1.9, when a healthy person's is 5.8-6.0. Severe.

My Bell Disability Scale score is 20%-30%. Severe. 5/

As I wrote in Post 1, those of us with MEcfs don't like to admit the severity of our illness. I certainly don’t like to admit it, especially not to myself, and am just now saying it out loud*.

But spending most of my life in bed (65-75% of the time) means I'm severe. 4/

I also don't usually create with photoshop - my photos are typically straight out of camera with maybe cropping.

But here we are.

This is where I spend most of my life. In bed. Staring at myself in the mirror opposite. Blinds closed. Many times unable to sleep or I do anything. Just ... stuck. 3/

It’s a photograph I took of myself, then edited & beat up in photoshop. I created it so long ago, I don’t really remember my thought process. I did some more editing before I submitted it (my OCD required that I remove artifacts & things that were distracting). 2/

Two black and white stylized images, the same on each side, one turned toward the left and one toward the right. The left side is dark grey, and the right side is light grey. It shows a bed, dresser, piece of artwork, and closed window reflected in a mirror, with a human face propped up on pillows at the bottom.

Today, August 8, is #SevereMEday. (Post 2 of 3)

I don’t normally participate (or like to admit I'm in the severe category), but for some reason I did this year: here is my entry for @meactnet.bsky.social Severe ME Artists Project 2025, a self-portrait I call “Night and Day”. 1/

A yellow candle on a dark background with a white #MEAction logo in a circle. It says: "Severe ME Day of Understanding and Remembrance August 8".

PS. Also in honor of #SevereMEDay, four organizations - @openmedf.bsky.social, @batemanhornecenter.bsky.social, @solveme.bsky.social, & @meactnet.bsky.social - have launched #UnitedForME, a shared hashtag to amplify stories, art & education from the Severe ME community. 10/10

(If you have MEcfs or another energy-limiting illness, be sure to pace yourself. It can be very overwhelming and sad.) 9/

I remain one of the #MillionsMissing
#SevereMEDay #SevereME #pwME #UnitedForME
#MyalgicE #MEcfs #MyalgicEncephalomyelitis
#Advocacy #StrongerTogether #CanYouSeeMeNow

Severe ME Artists Project 2025 #MEAction is excited to present this year's Severe ME Artists project in recognition of Severe ME Awareness Day!

with a Writer's Gallery, a Video Gallery, and an Art Gallery. Over 100 of us MEeps submitted pieces, including me; see my next post for the art I sent in, and scroll through the #MEAction Gallery when you get a chance. It's very powerful. 8/

and over many days or even months. Functionality and abilities vary, but we all have one thing in common: this disease really really really sucks. (And yes, that's the scientific term for it.)

In honor of Severe ME Day, @meactnet.bsky.social is sharing the Severe ME Artists Project 2025, 7/

and the one after that. And sometimes it lasts 5-7 days. (Any guesses how many days doing these posts will cost me?)

Many of us with MEcfs are isolated, alone. Or our only type of support is online. Many cannot communicate at all. Many can create, but only by using their time sparingly, 6/

Its hallmark symptom is called post-extertional malaise (PEM) [or postexertional neuroimmune exhaustion (PENE)]: where any sort of exertion - cognitive, physical, emotional - causes a worsening of symptoms. Some people get PEM immediately; in my case, it's the next day. And the one after that, 5/

MEcfs is the worst disease you've never heard of (unless you've been reading my blog posts where I've banged on about it for the last decade I've been ill). It's a complex chronic disease that impairs multiple body systems: neurological, cardiovascular, respiratory, immune, sleep, and more. 4/

(Which, by the way, 25% is only an estimate of the number of patients with severe ME; the actual percentage may be much higher! We tend to downplay our symptoms. No one wants to admit they are that sick. As the meme says: "I don't pretend to be sick, I pretend to be WELL.") 3/

Sophia's story:

by the 25% ME Group (25megroup.org) as a response to the death of Sophia Mirza from the UK, only 32 years old when she passed, the victim of disbelief & medical abuse.

It is a day to honor the 25 percent living with the most severe form of this disease, and remember those who have died from ME. 2/

A bench sits in front of a frame on the wall. Inside the frame is the #MEAction logo in red, and the words "Severe ME Artists Project Gallery 2025. Now open for virtual showing at #MEAction website: bit.ly/SMEAP25"

Today, August 8, is #SevereMEday. (Post 1 of 3)

The Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance was started in 2013 1/

I remain one of the #MillionsMissing
#SevereME #pwME #UnitedForME
#MyalgicE #MEcfs #MyalgicEncephalomyelitis
#StrongerTogether #CanYouSeeMeNow

Transcript Thing 2: I have a sad Thing 1: Are you looking for solutions or comfort? Thing 2: I would like to be angry, then sad, then comforted, then adventure for solutions, then giggles Thing 1: Let’s start! Thing 2: Raar

Would you like solutions or comfort?

#raaar

Unraveled: Understanding Complex Illness David Kaufman, MD, an internist and Ilene Ruhoy, MD, PhD, a neurologist, are both experts in chronic complex illnesses. We focus on those suffering with ME/CFS, hEDS, MCAS, SFN, POTS, autoimmunity, Lo...

Another episode of Unraveled: Understanding Complex Illness just posted. We have our usual rambling conversation this time about Mast Cell Activation Syndrome.

Please take a look, subscribe, and comment. Also always want to hear suggestions for future episodes.

www.youtube.com/@Unraveledpo...