Lynearty

Artist/photographer .. Lover of life and nature, hater of 99.9% of humans..Fibromyalgia and M.E Warrior

[Carole Bruce @CaroleBruce17]

Since October 7, 2010, #ME/CFS sufferers have been permanently prohibited from giving blood. The NHS Blood and Transplant ‘Give Blood’ website in the UK carries a comprehensive list of different conditions that might prevent you from giving blood. It includes ME And yet, and yet!

[Tom Kindlon @TomKindlon]

A patient who created a popular sheet on how to deal with somebody in postexertional malaise (PEM) has adapted it for hospital staff

#MEcfs #LongCovid

[Vlad Vexler @VladVexler]

#SevereMEDay

Severe ME is lying in darkness, wondering how you can be this ill without being dead - while the world forgets you exist.

From the outside, it's a body that looks still, a room that's dark and quiet - but underneath, there is a patient dealing with a storm.

At the very severe end, patients can't speak, tolerate light, sound, touch, or food - and yet these losses are often not as bad as the physical suffering itself.

Up to 25% of the 400K people with ME in the UK have severe ME.  Severe ME patients are the most socially abandoned group I can think of in the Western world.

[Adam @ABrokenBattery]

Yesterday’s Channel 5 News spoke to David Spencer, father of Kara Jane, who recorded music from her bed while living with severe ME. She passed away at 32. Her posthumous second album In Limbo was released for #SevereMEDay. #MECFS

[Ror Preston @RorPreston]

The results of the TREATME survey by @OpenMedF are in, and provide a direct and important comparison between pacing and graded exercise therapy (GET)

The results are stark and clear:

Pacing helps ✅ GET harms ❌

#MECFS #LongCovid

[Carole Bruce @CaroleBruce17]

This is how many people imagine #ME patients spend their time. Soon our heroine will be woken by a kind and efficient housekeeper with tea and cake and later she will be chauffeur driven in her motability car to an ME specialist will listen and prescribe the latest NHS treatment

[PwME 4 bioMEdical research @ValeBodi]

Austria's former Health Minister Rudolf Anschober says that the multisystem disease #MECFS has been “dramatically neglected”- and that this has been the situation for decades. Medicine, science and health policy must now "assume their responsibility", https://t.co/IVCLslxgen

[Solve ME/CFS Initiative @PlzSolveCFS]

A new study co-authored by @VirusesImmunity (@YaleMedicine) in @J_Immunol on distinguishing groups of people w/ #MECFS based on blood-plasma & cerebrospinal fluid proteins has implications for causes, symptoms, & treatments. Read our summary:
https://t.co/KJ47ioGn2x

[Carole Bruce @CaroleBruce17]

Another 💔 as another #ME patient has chosen to end her life today. It became unbearable for her to live with all the pain and hopelessness of it all.

[Lynearty @lynearty]

@renamemecfs Sorry to say it can last as long as it takes…anything from days, months and into years…
I caught an infection in 2019, just managing an hour or so out of bed. Had ME since 2000, sometimes I manage a life, mostly I have no life…
Sending healing, take it easy

[Sten Helmfrid 🇺🇦 🇬🇱 @StenHelmfrid]

.@PaulGarnerWoof argues that his case (n=1) shows that positive thinking and exercise will cure #MECFS. Here are some more comprehensive statistics from a recent survey. Graded exercise therapy (GET) is the worst intervention by far (n=299), and pacing is the best (n=803).

[verenabee @verenabee]

Thinking of Denise, who will end her life at 10.30 am today, as her ME/cfs has been unbearable for a long time.🕯️
Earlier, more and better research could have saved her life - like that of so many others.
I hope a better life is waiting on the other side for them.

[Anil van der Zee © @AnilvanderZee]

A trailer of the documentary "Doctors as Patients" where five medical doctors open up about living with #IACC conditions like #pwME, #longCOVID & chronic #Lyme.

I invite you to watch and share it far and wide. Their voices have even more urgent health issue since the pandemic.

[María Richardson @_diatoma]

This is my 9th year advocating for #MyalgicEncephalomyelitis #MillionsMissing #MEAwarenessMonth.
My health has only worsened since (9 years ago I was able to work FT! Now I can't even work PT and am mainly housebound), but I'm hopeful because: (1/6)

[Adam @ABrokenBattery]

Clip from The Morning Show Australia
“I would wake up and count down the seconds until I could sleep again because being unconscious was the only relief.”
Lily Schubert shares her journey living with ME, a chronic illness that left her bed-bound for 6 yrs.

[Chronically Vexed ♿🏳️‍🌈🏳️‍⚧️ she/they @ChronicallyVex]

We've just hit 19000 signatures!

If you're angry at the #LocalElections results and want to stop #Labour cutting Disability benefits then sign and share this petition everywhere!

We're nearly 1/5 to our target in just over 3 weeks.

Let's keep going!

https://t.co/2z4GfiO4dF

[Martin @pausedME]

Surviving Very Severe #MECFS – in both the literal and the emotional sense – is extremely rare.

And yet, I know many who have improved.
I’ve also lost many.

But there is hope.
To categorically rule that out is just as wrong.

[Adam @ABrokenBattery]

#MEAwarenessMonth – Day 2
1986, Dr Ramsay published the first definition of ME. He described a unique form of fatigability, that must be present for a diagnosis. He warned against relapses from overexertion, rejected psychological theories and pointed to biomedical causes.

[Steven Phillips, MD @StevePhillipsMD]

We don't have a definitive cure for later stages of Lyme, bartonella, brucella, Q fever, & many other chronic infections.

But docs should know that treatments can mean the difference between a good life vs a hellish existence.