Author | Lightnews

Dan Wyke @danwyke.bsky.social · Mar 14

'A Momentary Pause in the Act of Dying'. Hillary Johnson writes about hypovolemic shock and low blood volume in Myalgic Encephalomyelitis.
hillaryjohnson.substack.com/p/a-momentary-…

https://hillaryjohnson.substack.com/p/a-momentary-…

2 5

Dan Wyke @danwyke.bsky.social · Jan 19

"ME/CFS is a diagnosable sequela that develops at an increased rate following SARS-CoV-2 infection."
link.springer.com/article/10.1...

Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study - Journal of General Internal Medicine

Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may occur after infection. How often people develop ME/CFS after SARS-CoV-2 infection is unknown. Objective To determine the inci...

link.springer.com

12 32

Dan Wyke @danwyke.bsky.social · Jan 8

New research paper: 'Abnormal T-Cell Activation and Cytotoxic T-Cell Frequency Discriminates Symptom Severity in ME/CFS'
www.medrxiv.org/content/10.1...

Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating but poorly-understood disease. ME/CFS symptoms can range from mild to severe, and include immune system effects alongside ...

www.medrxiv.org

5 21

Dan Wyke @danwyke.bsky.social · Dec 14

I just had a really interesting conversation about Myalgic Encephalomyelitis with Gemini. It was more knowledgeable (and sympathetic) than any of my registered GPs from the last 15 years.

2 2 31

Dan Wyke @danwyke.bsky.social · Dec 11

Thinking about taking mushrooms again to fix the persistent downregulation of my immune system and overexpression of inflammatory cytokines. Can any medically minded mycologists say how long a herx response should last? In the past I've had to give up after two or three days.

1 6

Dan Wyke @danwyke.bsky.social · Dec 11

Although most doctors accept Post-viral Fatigue is a common medical condition, I'm yet to meet one who can explain its pathophysiology. PVFS has been around for decades so why hasn't it been deeply researched? Surely it would shed some light on Myalgic Encephalomyelitis. 🤨

2 1 14

Dan Wyke @danwyke.bsky.social · Dec 11

Results from the DHSC's ‘Women’s Health – Let’s talk about it’ survey are in the news again today. 100,000 women in England responded. More than 4 in 5 (84%) said they weren't listened to by HCPs and their symptoms weren't taken seriously or dismissed. gov.uk/government/cal…

1 9 15

Dan Wyke @danwyke.bsky.social · Dec 10

It's odd that most drs have no problem accepting Post-viral Fatigue but they respond with a completely different attitude when it develops into a chronic condition like Myalgic Encephalomyelitis. Do they just run out of sympathy or does bps brainwashing kick in?

1 6 21

Dan Wyke @danwyke.bsky.social · Dec 10

My teenage daughter's fate hangs in the balance. Will her Post-viral Fatigue fizzle out or will it develop into a chronic condition like Myalgic Encephalomyelitis? One thing's certain, the medical profession has nothing to offer her that will prevent the latter from happening.

6 6 71

Dan Wyke @danwyke.bsky.social · Dec 7

A commitment by NHS England to review ME services sounds like a way to placate patients and further delay meaningful change. If they were serious about implementing change, they would have done so in 2021, immediately after the release of NICE guidelines.

3 28

Dan Wyke @danwyke.bsky.social · Dec 7

With the release of the ME/CFS Delivery Plan delayed again, it's obvious this government has no intention of providing meaningful support for pwME, despite the lip service paid by various MPs. The government cannot be seen to favour one group of chronically ill patients while persecuting the rest.

1 6 29

Dan Wyke @danwyke.bsky.social · Nov 27

I suspect this government has delayed releasing the Delivery Plan for Myalgic Encephalomyelitis for the same reason ME isn't mentioned in the Get Britain Working White Paper: ministers don't want to acknowledge the high number of chronically ill people eligible to receive benefits.

6 14 70

Dan Wyke @danwyke.bsky.social · Nov 24

There are still no treatments. He still had nothing useful to say about managing the condition or reducing the chance of it developing into a chronic condition. And, shockingly, he still claimed he wasn't aware of the risks associated with exercise. 2/2

4 3 68

Dan Wyke @danwyke.bsky.social · Nov 24

Teenage daughter has been diagnosed with Post-viral Fatigue Syndrome which is obviously a cause for concern given my medical history. Talking with her GP, what struck me was that nothing has improved since I approached him in a similar situation 14 years ago. 1/2

17 12 94

Reposted by Dan Wyke

Dr Andrew Meyerson @andrewmeyerson.uk · Nov 16

Dear 🇬🇧,

Where I come from, one medical emergency is all it takes to bankrupt a family and put them out on the street. Don't ever give up on the NHS.

#SOSNHS

An American man holds up a sign in front of a petrol station in Las Vegas area saying “our 19 month old baby girl was in ICU for 28 days and we got behind on rent. Looking for any extra work to get caught up. HVAC. Electrical. Plumbing. Tile. Etc. (702) 577-4372. Any work of help greatly appreciated.”

28 360 890

Reposted by Dan Wyke

Jan MyE (Laverick) @janmye.bsky.social · Nov 14

Hi

Looking to connect (and reconnect) with people who understand very severe ME, when health allows. Woman of few words (not by choice). Appreciate follows.

6 6 20

Reposted by Dan Wyke

It's ME(Jaime) @exceedhergrasp1.bsky.social · Nov 14

✨This petition will close TOMORROW, Nov 15!✨ We're over 7k-- next stop 10k!

In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses.

Sign & share widely!

US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE

Black square with white and red writing. Text: #MEAction’s Petition to the NIH to Fund the ME/CFS Roadmap now has over 7,000 signers! Add your voice. Sign now!

9 71 110

Reposted by Dan Wyke

Niko Suvisto @nikosuvisto.bsky.social · Nov 14

This will be my start to use this platform. I’d like to start by introducing my new photo project of documenting my life living with severe #MECFS.

I have thought about ways to advocate, and doing it through photography is the best way for me. 1/7

A man in a fetal position, upright, in a hospital bed.

19 57 220

Reposted by Dan Wyke

Steve Fifield @stevefifield.bsky.social · Oct 17

A list of 600+ people, some of which may be familiar (look in the “About” tab for the list, otherwise you just see all of their posts):

bsky.app/profile/did:...

5 12 31

Reposted by Dan Wyke

Kelly @broadwaybabyto.bsky.social · Nov 13

When you’re chronically ill - your baseline is everything. You will protect it at all costs.

Non disabled people can’t understand how much independence and autonomy means to us. Whatever small amount we have left - is priceless.

That’s why we don’t take necessary risks. We know what’s at stake.

20 210 810

Reposted by Dan Wyke

Ian Jackson 🗿😷🇪🇺 🏴󠁧󠁢󠁳󠁣󠁴󠁿 🩺🚲 @ibjhealth.uk · Nov 11

It is crazy that patients are still being pushed into therapy that will make them worse. Please sign the petition.
chng.it/mXFzY79BQZ

Sign the Petition

Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

chng.it

1 20 49

Reposted by Dan Wyke

Binita Kane @binitakane.bsky.social · Nov 11

I saw a patient last week with ME who in 2023 was told by the MECFS service to ‘get back to the gym’. She did 20 minutes, collapsed and hasn’t walked since. The advice is still out there, still wrong and the harm is real.

Trish Davis @ozfish.bsky.social · Nov 10

Cochrane is stubbornly refusing to withdraw the 2019 review recommending exercise therapy for ME/CFS despite being supplied with ample evidence that it doesn't work and causes harm for #pwME with post exertional malaise.
Please sign the petition:
chng.it/zTZ7vX9Czd

Can you spare a minute to help this campaign?

Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

chng.it

11 150 350

Reposted by Dan Wyke

Emma Gore-Lloyd @emmagl.bsky.social · Nov 12

Karen wore both her day job hat and her campaign hat for this piece on narratives surrounding ME and Long Covid. Please read!

#ThereForME
#pwME
#pwLC

open.substack.com/pub/therefor...

From ‘yuppie flu' to ’anti-recovery activists’

Why narratives around ME and Long Covid matter – and how to change them

open.substack.com

9 22

Reposted by Dan Wyke

Erin Biba @erinbiba.bsky.social · Nov 10

For the newbies, one of the great features on here is that when someone has tried to quote-post dunk on you, hit the … and select “detach quote” and nobody will see the post or who wrote it and they will look like an asshole. (Blocking works like this too.)

Posts
+
Replies
Media
Patrick@fanxioustastic.bsky.social •2m
I do not remember things that did not happen.
• Removed by you
•••

660 5.1K 13K

Reposted by Dan Wyke

Sabrina Poirier @sabrinapoirier.bsky.social · Nov 12

I have started a Starter Pack for ME and Long COVID. 💙

It includes some mutuals with other packs but also some new faces too. :)

Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙

go.bsky.app/6R7bqc7

140 140 340