#medsky ME/CFS is an umbrella term so it's important to stratify patients. But all Dr's need to understand the danger of exercise in these patient groups. Pushing patients to exercise has led to dire outcomes.

Patient selection was ME/CFS-CCC Canadian Consensus Criteria

History time, folks! @rfh1955.bsky.social @meassociation.org.uk Read Dr Melvin Ramsay's medical memories here: www.amazon.co.uk/Myalgic-Ence... #RoyalFreedisease #me/cfs #medicalmemories He was the RFH infectious diseases consultant, who managed the hospital's medical response to the epidemic

Any #LongCovid or #MEcfs people who have tried testosterone want to educate this journalist?

New ME-ICC study to start the year off on a good note. www.endocrinepractice.org/article/S153... 111 patients selected using the ME-ICC. ME-ICC: myalgic encephalomyelitis- International Consensus Criteria #MyalgicEncephalomyelitis

So, Republicans will go to the Supreme Court to refuse to bake a gay cake, but they will sue if you refuse to play in a fascist's venue?

Holiday message from View from the Trenches of #MyalgicEncephalomyelitis open.substack.com/pub/colleens...

The federal agency approved Augmentin XR in just 2 months through the new CNPV pilot program, marking a major step toward rebuilding domestic antibiotic manufacturing and addressing longstanding the country's drug shortages. #IDsky #Medsky

The more we know about the risks of a medication the better. Knowledge is power. (Bactrim, Septra, and Sulfatrim)

Talk by Amy Proal of Polybio. Important work to find cure for ##MyalgicEncephalomyelitis There's nothing "post" about these viruses and other pathogens. We need to find a way to debug our bodies. youtu.be/XMcVUrErzeU?...

News from View from the Trenches of #MyalgicEncephalomyelitis - Byron Hyde memorial - Ivabradine now generic - Oxaloacetate costs how much? - Research list - ME/CFS? open.substack.com/pub/colleens...

So... is that part of what's happening to those of us with #MyalgicEncephalomyelitis? When "excessive vigorous exercise" for someone with severe ME can be as little as turning over in bed it would explain the cognitive issues pwME deal with ongoing.

We have seen how word misunderstandings have pushed institutional systemic bias for people with #myalgicencephalomyelitis. “Fatigue” narrative has buried the real meaning of myalgic encephalomyelitis. Interesting rundown of how words have different meanings. open.substack.com/pub/youcankn...

Tiny hope left that something like this could treat long covid & mecfs, or some other discovery, before the end.

This may be something those of us with #MyalgicEncephalomyelitis could find useful. Anyone know if other states offer an "invisible illness" designation on driver's license?

I'll say it again: what @thereforme.bsky.social continue to do in just 1 year for #pwME is astonishing. It is giving us so much dignity back. Huge milestone last week with @tessamunt.bsky.social and other MPs (& a *little* push coming from Germany...) ⤵️⤵️ www.thereforme.uk/p/campaign-u...

#gulfwarillness research showed improvement in migraines/ headaches by avoiding glutamate. I think this likely applies to #MyalgicEncephalomyelitis as well. I get horrendous headaches from Monosodium Glutamate (MSG). www.eurekalert.org/news-release...

The Independent: 'Strange changes found in blood of long Covid patients' 'Tiny clots appeared larger-than-normal in long Covid patients, study finds' www.the-independent.com/news/science...

News from View from the Trenches of Myalgic Encephalomyelitis Medicare: Telehealth is back (not for long) Medicaid to add 80 hours per month work requirements Hemp products at risk Tips to save money on prescriptions. open.substack.com/pub/colleens...

Study also underscores the importance of stratifying by gender.

Important condition to rule out when considering a diagnosis of #MyalgicEncephalomyelitis

The spending bill signed by the president will essentially prohibit hemp-based THC products nationwide in a year.

Wow so she was AG of Florida that whole time Epstein is going buck wild down there huh

Since #MyalgicEncephalomyelitis leads to reactivated viruses, I am interested in any new antivirals. Interesting research:

#NEISvoid PSA TIL patients and caregivers can get free access to Elsevier papers! Email your request to [email protected] and include confirmation you are a patient. Turnaround is 48 hours. #LongCovid #MECFS

Would like to see this study repeated using patients who have ME as defined by the International Consensus Criteria (ICC). I think many of us in the ME-ICC group deal with MCAS and orthostatic intolerance.

Urinary tract infections (UTIs) are unpleasant & can lead to serious health complications. With the immune dysfunction seen in #MyalgicEncephalomyelitis, many of us experience multiple / hard to treat UTIs. New drug may offer better treatment options. www.contagionlive.com/view/fda-app... #Medsky

Low dose naltrexone was also discussed. I wrote about that here: open.substack.com/pub/colleens...

I couldn't agree more! Biomarker stratification is a goal we need for all #MyalgicEncephalomyelitis research! Until we have that, we can better stratify using the International Consensus Criteria (ME-ICC) to screen patients.

New View from the Trenches of Myalgic Encephalomyelitis Substack covers variety of topics. #MyalgicEncephalomyelitis October Slide Corina Duyn Life Hidden Maureen Hanson MEGC #54 Conferences open.substack.com/pub/colleens...

1990! We have had many ignored findings that explain what is happening to people with #MyalgicEncephalomyelitis. The systemic bias has caused decades of harm that could have been prevented.

Interesting about the thalamic improvement. I have heard reports of patients having an uptick in reactivated viruses from doing HBOT. Wonder if the patients had viral treatments as well.

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 #PostExertionalMalaise #PEM

Kaine: "We can't do a deal with Trump then have him tear it up tmrw & start mass firings or canceling programs he doesn't like or ones that help blue states. We have to be sure that a deal is a deal ... thus far he's not been willing to even discuss a deal, much less guarantee he'll live by one."

It’s POTS Awareness Day! People with POTS are often misdiagnosed with “anxiety”. It can take 7-10 years to get a proper diagnosis. I spent years fainting and sustaining severe injuries before a doctor finally figured it out. My guide to diagnosis: www.disabledginger.com/p/its-just-a...

This is deeply concerning for those with marginalized diseases like #MyalgicEncephalomyelitis

Illinois Secretary of State Alexi Giannoulias issued a stern warning to ICE agents after a video on social media went viral. “Swapping out license plates or tampering with them to avoid or conceal detection is illegal, unsafe and will not be tolerated...." youtube.com/shorts/dmQoy...

Trump’s new Epstein Ballroom will soon be the venue for many sweet 16 parties and quinceñeras.

Tell me again about the Confederate statues we can't tear down.

As part of its strategic planning process, Illinois Public Media wants to know what you think. This survey takes less than 10 minutes to complete, and your voice will make a difference. go.illinois.edu/IPM-BlueSky

21 October 2025 Low-dose rapamycin alleviates clinical symptoms of fatigue and PEM in ME/CFS patients via improvement of autophagy: a pilot study Brian T. Ruan, Sarojini Bulbule, Brooke Gile, Amy Reyes, Bela Chheda, Lucinda Bateman, Jennifer Bell, Brayden Yellman, @grachstephanie.bsky.social

Latest View from the Trenches of Myalgic Encephalomyelitis covers recent news about a possible blood test. open.substack.com/pub/colleens...

Apparently the letter exposing the faults of the NIH study about "effort preference" hit a nerve. Here is the response. Reply to: Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome | Nature Communications share.google/18JL0YaJqgK7...

1) Remember the intramural NIH study about effort preference in ME/CFS? Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.

Fifty years ago today. The Sacramento Bee, California. 17th October 1975. "Icelandic disease" is one of the many names to have been given to 'M.E.'. #myalgicencephalomyelitis #myalgice #mecfs

“Most of the people I’ve seen with #MECFS are so much sicker than my cancer patients.” Dr. Fridbjörn Sigurdsson, a former medical oncologist now focused on ME/CFS, speaking at the 2025 @investinmeresearch.bsky.social conference. Thanks to @mecfsskeptic.bsky.social for finding the clip.

ME/CFS Remember? CFS and the CDC's Failure to Respond: Primetime Live (1996) www.youtube.com/watch?v=AW0x...

Dr Nigel Speight writes that ME families are still encountering charges of FII (Fabricated and Induced Illness) formerly called Munchhausen Syndrome by Proxy. In the UK he believes the current paediatric guidelines regarding FII need to be changed. tinyurl.com/44c4zykd