Author | Lightnews

Gretch @gvnett.bsky.social · 12d

It’s ok if you’re not ok. It’s all such a lot. Even though I am
alone in a dark room, scared and in pain I know there are millions of people who share and understand my grief, loss and yearning.
#mecfs #LongCovid #ChronicIllness #pwME

Dark and moody background with Woman standing on the waters of edge. Quote from zora Hurston- no hour is ever eternity but it has its right to weep.

6

Gretch @gvnett.bsky.social · 12d

🫂

Reposted by Gretch

ME Association @meassociation.org.uk · 13d

The 18th October was World Menopause Day, shining a spotlight on the challenges faced by women during menopause.

The ME Association has a free downloadable booklet about menopause, which you can access here: https://meassociation.org.uk/fhrt

#MECFS #pwME #MyalgicE #Menopause #WorldMenopauseDay

2 3

Gretch @gvnett.bsky.social · 14d

Repeat after me.
#mecfs #LongCovid #pwME #spoonie

9

Reposted by Gretch

🌸Bibi🌸♿ (formerly bibicosplays) @bibiblossoms.bsky.social · Nov 7

If you're quiet about your disabilities, you get accused of being a fake. If you're outspoken, you get accused of being attention seeking.

Disabled people deserve to be believed and supported without hate. We deserve to be able to thrive.

73 2.2K 5.9K

Reposted by Gretch

Sue Poncin @sueponcin.com · Oct 2

Ultimately, we hope this work not only contributes both to a reliable diagnostic tool and a deeper understanding of ME/CFS but also continues to bring understanding of the biological problems that result in the lived experiences of these patients”

ME/CFS help = Long COVID help

Billy Hanlon @bhanlon15.bsky.social · Oct 2

Discover Magazine: 'Newly Identified Biomarkers Could Help Diagnose Chronic Fatigue Syndrome'

"ME/CFS affects a lot of different parts of the body...analyzing plasma gives you access to what's going on in those different parts." - Maureen Hanson

www.discovermagazine.com/newly-identi...

Newly Identified Biomarkers Could Help Diagnose Chronic Fatigue Syndrome

Learn more about the tests researchers are developing with machine learning tools that could be key in diagnosing chronic fatigue syndrome.

www.discovermagazine.com

4 17

Gretch @gvnett.bsky.social · Oct 2

A rose bud without its bloom and yet still so beautiful. #FindingBeautyWhileBedbound #mecfs #pwME #BedBoundSoulFood

Close up Black and white photo of a rose bud with no petals. Tiny tendrils still hold such beauty

Monochrome photo of stem and rose bud without its petals. Still beautiful

3

Reposted by Gretch

Marushka-T @marushka-t.bsky.social · Sep 26

If patients with #longCOVID and #MECFS can wrap our heads around the complexities of our #chronicillness -- and we've had to, often with little help -- then doctors are more than able to do the same.

None of this is new. We need informed and supportive #healthcare. We've needed it for decades.

Denis - The COVID Info Guy @thecovidinfoguy.bsky.social · Sep 26

‘Some doctors swear blind it does not exist’: Why this leading specialist is still focused on long COVID.

"Professor Anthony Byrne says the difficulty with long COVID is the phenotypes can fall into various specialties."

Source: www.ausdoc.com.au/news/some-do...

‘Some doctors swear blind it does not exist’: Why this leading specialist is still focused on long COVID

By Bella Rough | 25 September 2025 | AusDoc

Associate Professor Anthony Byrne gets that some doctors are sick of COVID-19 and its sequelae.
“People probably have a bit of PTSD about it,” he says.
“It changed so many facets of everyone’s life that lots of people want to put that behind them, in the community, the media and, to some degree, medically.

“But it was also an amazing opportunity to learn about a new illness and discover, in real time, how to investigate and manage it.”
The Sydney respiratory physician has specialised in long COVID for five years.
He was part of a long COVID clinic at St Vincent’s Hospital in Sydney from its inception until this month, when hospital management decided to close it.
A hospital spokesperson said patients would transition to specialist respiratory and rehabilitation services.
Professor Byrne also plans to keep seeing patients with long COVID privately.
However, he worries about patients with long COVID struggling to find doctors with the skills, suitable appointment length and inclination to treat them.
“Unfortunately, some doctors will swear blind that long COVID does not exist, but this is not a made-up disease,” said Professor Byrne, convenor of the Respiratory Infectious Diseases special interest group at the Thoracic Society of Australia and New Zealand.
He said governments were failing to properly fund multidisciplinary clinics, which meant patients were often defaulted to being treated by whichever specialists were available to them.
“Hopefully, the specialists have an interest in listening to patients and identifying what their problems are, doing appropriate assessments to
“Hopefully, the specialists have an interest in listening to patients and identifying what their problems are, doing appropriate assessments to identify things they can treat: the person with undiagnosed diabetes, the person with undiagnosed ischaemia.
“That’ll be important and will help a lot of people.

“But for a certain percentage, it’s very difficult in a 30-minute specialist consultation to deal with the psychiatric aspect, the psychosocial aspect, the disability aspect, that they haven’t worked in six months, the can-you-fill-in-these-forms-for-six months, the can-you-fill-in-these-forms-for-me.”
He said the multidisciplinary approach at the St Vincent’s clinic involved different specialists reviewing the patient’s symptoms and trying to establish a phenotype for each patient.
“In people with an asthma-type phenotype, we found that when we prescribed them medications essentially for asthma, which had not been previously diagnosed or treated, they seemed to have an improvement in symptoms and trajectory.
“That’s one example.
“Another is when we have someone with poor sleep hygiene because one of the symptoms of long COVID is fatigue.
“People sleep when they’re tired during the day, but it puts out the circadian rhythm.
“So we give them advice on sleep hygiene and maybe prescribe melatonin where appropriate, and look to identify other sleep disorders.
“People with obstructive sleep apnoea are much more likely to have severe COVID disease, and there’s also an association with long COVID.
“As you can imagine, if people are fatigued and have severe sleep apnoea and don’t know about it, people get better if that’s diagnosed and treated.”
Without a multidisciplinary team, patients risked bouncing between expensive specialist appointments until they found the right path, Professor Byrne said.

For example, patients with long COVID could have chest pain and be referred to a cardiologist when the cause lies in other organ systems.
“No offence to my cardiologist colleagues, because the cardiologist would appropriately do investigations — ECG, maybe a stress test,
“No offence to my cardiologist colleagues, because the cardiologist would appropriately do investigations — ECG, maybe a stress test, maybe a CT coronary angiogram — and exclude important diagnoses like critical ischaemia, cardiomyopathy or arrhythmia,” Professor Byrne said.
“But the patient has spent their money, had two or three appointments with the specialist, lightened their wallet a lot, and still has this symptom of chest pain.
“So you look at the other contributing factors or organ systems: the brain, the respiratory system, the gastrointestinal system.”
Ultimately, the approach to long COVID was “just good medicine”, he said.
“You listen to patients, you do no harm, you look to identify those conditions that you know about and provide treatment for, then you reassess and follow up.”

3 5

Reposted by Gretch

The Real McCoy @rippermd41.bsky.social · Sep 16

Good news, it does have a save and return button!

It took me approx 15 mins to complete.

#MECFS

ME/CFS San Diego @mecfssd.bsky.social · Sep 16

ME/CFS Patients, families, providers, and researchers are invited to take part in a global survey on case definitions and core symptoms. Help inform research and build consensus. May take ~30 mins.
Survey: redcap.is.depaul.edu/surveys/?s=P...

GLOBAL SURVEY: Can we reach consensus
on an ME research case definition?
ME/CFS Patients, Families, Healthcare Providers, and Researchers are welcome!

5 7

Gretch @gvnett.bsky.social · Sep 15

#mecfs #spoonies #longcovid #pwME

You are not to blame. You are not an unreliable witness to your own body. I see you and I believe you. You are not alone. We are in this together.

1 10

Reposted by Gretch

Larre Bildeston @larreau.bsky.social · Sep 7

The problem is not “mothers doing their own research”.

If I hadn’t done so, I’d have further disabled my #MEcfs teen whose doctors and allied health pros ALL told me to make him exercise.

The problem is disinformation.

TBC, I listened directly to the disabled community.

Damn good idea, that.

3 3 27

Gretch @gvnett.bsky.social · Sep 7

Non chronics, we ask that you don’t confuse what helps a person cope with what cures a person of an illness. #mecfs #pwME #MEAwareness

Just so you know. Two things can be true. I can appreciate the benefits of hope and positivity and still understand that hope and positivity will not cure M.E.

4

Reposted by Gretch

Tom Kindlon @tomkindlon.bsky.social · Aug 27

ME communication/caregiver survey to help with the development of a communication app

Caregiver survey
docs.google.com/forms/d/e/1F...

ME patient survey
docs.google.com/forms/d/e/1F...

#LongCovid #MEcfs

Communication app in development
An app is being developed to help people with ME and Long COVID (and similar) communicate their needs. The developers are requesting input from caregivers. Please fill out the short survey (google doc link below). Your responses will make this app as helpful as possible.
ME Communication / Caregiver Survey
Thanks for taking the time to help us today! We're creating a simple tool that will help people with ME and Long Covid communicate their needs when speaking is too hard. We'd love your input to make sure it truly helps.
If you are a caregiver for a person with ME, this is the survey for you!
https://docs.google.com/forms/d/e/1FAIpQLSfrTu82ubZYeDZZjSKHJUccv0QTq4rDp2OlQpGk8MDuHxThAg/viewform?pli=1
If able, the input of the person with ME you care for is of great value. The link so they can complete the survey People with ME SURVEY HERE.

1 10 8

Reposted by Gretch

Chronic Illness Humor @chronicillness.bsky.social · Aug 22

@annakatarinaz on X

The pressure to be a credible patient is intense. You can't look too well (not sick enough), or too poorly (faking it for attention). You can't argue back ("difficult" pt), or break down (head case), or seem too interested in medication (addict). Any others? #chronicpain

14 27 130

Gretch @gvnett.bsky.social · Aug 23

How do you explain to people that boredom would be a luxury. Once you have #severeME or in a crash there is just enduring. There is just trying to get thru one moment to the next. #mecfs #pwME

1 5 23

Gretch @gvnett.bsky.social · Aug 9

Alone, in the shadows but tethered together.
Feel the silent, gentle solidarity of those that know, believe and understand your suffering.
#SevereME #mecfs

1 1 5

Reposted by Gretch

Solve M.E. @solveme.bsky.social · Aug 8

What if your body couldn’t bear light, sound, movement — or even touch? Today, #SevereMEDay, we ask you to imagine living that way not just for a day… but for years. For people living with Very Severe ME, this isn’t a metaphor — it’s reality. 🧵

2 19 37

Reposted by Gretch

Ninni @katfat2.bsky.social · Aug 8

A little hope on Severe ME Awareness Day.

#MyalgicEncephalomyelitis #SevereME #MEcfs #MyalgicE

Ninni @katfat2.bsky.social · Aug 8

The long-suspected Genetic component of Myalgic Encephalomyelitis is getting unlocked at last.
www.thetimes.com/uk/healthcar...

Breakthrough genetic study offers treatment hope for ME patients

Experts say ‘groundbreaking’ findings will be transformative as well as helping to end myth that the condition is ‘all in the mind’

www.thetimes.com

1 2 4

Gretch @gvnett.bsky.social · Aug 9

🙏🫂

Reposted by Gretch

Belasco @belasco.bsky.social · Aug 8

I don’t do this often (ever) but I thought for #severeMEawarenessDay I’d share something I wrote about being a #pwme

Welcome to the oubliette
The place of forgetting
who you once were and what you could’ve been
where thoughts ooze into slow and sticky words
and familiar movements become foreign enemies

Welcome to the darkness
The land of shadows
where you blend slowly into their soft purple shades

Welcome to the stillness
Where the sounds of life’s ongoing dance drift in
just beyond shuttered windows and closed doors

Welcome to ME

2 1 7

Reposted by Gretch

brokenwingpoet @brokenwingpoet.bsky.social · Aug 8

Today is Severe ME Day. A poem imagining a world free of the ableism that compounds the trauma of this dreaded illness.

#SevereMEday #pwME #MECFS #SevereME
#ableism #bedbound

Like a Fallen Feather

What if the ableism
heaped higher
the sicker we become,
figments of a
poisoned imagination
suffocating our own,
this anchor of shame
not ours to carry,
what if
– for even just this moment –
we released it completely?

What if we could hold
the disabled parts of ourselves
in our own two hands
the way one holds a fallen feather?

Its soft, delicate lightness
born on this wing to rise or
when wounded to rest
in the warm shelter of the nest
as long as need be, dreaming
of the demise of a culture
that wishes, quickens our own,
reborn as a community of care,
where pain is seen and tended,
not hidden and held alone,
where the body is not a tool
but a keeper of wisdom
not meant to die
untold, unheard.

1 8 21

Gretch @gvnett.bsky.social · Aug 9

It is not your fault pacing is so hard. It is not your fault that the smallest of things have a huge cost. It is not your fault the survival is often incompatible with pacing. It is not your fault that we don’t live in a world with access to adequate support to manage our illness. #mecfs #pwME

Pacing mantra: forgiveness for yesterday hope for tomorrow kindness now

3 7

Reposted by Gretch

#MEAction Network @meactnet.bsky.social · Aug 8

As we come to the end of Severe ME Day, I wish I had some powerful words that could bring you peace, hope, and encouragement.

What I can do is remind you that your words have power. Your stories matter.

#SevereMEday #UnitedForME #pwME

1 13 43

Reposted by Gretch

It's ME(Jaime) @exceedhergrasp1.bsky.social · Aug 7

Huge congrats to Chris Ponting and the whole Decode ME team on their preprint on #genetics of people with #MECFS!

Pre-print plus li'l video before we get into a deeper dive.

Vid: www.youtube.com/watch?v=0S5u...

Preprint: www.pure.ed.ac.uk/ws/portalfil... 🧪 🧵

www.pure.ed.ac.uk

14 57 190