Crystal

@Bosler_Aus @oslersweb Historically, one of the "polio family" infections, though possibly also caused by non-infectious damage to the same areas. Dowsett 2001: poliosurvivorsnetwork.org.uk/archive/lincol…. Hyde c2017: me-foreningen.info/2017/05/04/bar… and nightingale.ca.

@Bert_with_ME @return_to_her I assumed so. The other options were more for completeness, as some cold viruses also manifest as Summer Flu or GI issues. I'm not assuming any particular virus. Most people are unaware of ME's EV-Bs—very common, rarely considered. dholab.github.io/public_viz/001… ictv.global/taxonomy

@GemzME @return_to_her Flu A and H pylori were both confirmed by diagnostic testing. The handful of colds/viruses could’ve been a variety of things.

I was diagnosed with anxiety and prescribed 10mg Lexapro by a psychiatrist about 6 weeks before the crash that left me disabled and housebound for 9 months and counting. (Later diagnosed ME/CFS + POTS)

@Bert_with_ME @return_to_her Colds? Summer Flu, not influenza virus*? GI bug, not H. pylori*? Three classic ways to describe the onset of ME within weeks to months of infection. * may be present, possibly contributing, but not the primary inducing factor for myalgic encephalomyelitis

@return_to_her I'm very sorry to hear that. I never actually took the Lexapro, so I'm certain that it was not a factor in my case. I had a string of back-to-back illnesses (colds, flu, H pylori) and then over the course of a few months developed full blown ME/CFS.

@hjluks @1goodtern Recognition that some pathogens don't leave. They stay as noncytolytic forms and continue to progress these initial signs and symptoms as able. With these pathogens, infection may not be proximal to manifestations. An example: journals.plos.org/plospathogens/…

@1goodtern Why the astonishment? I see this so often in the office. How much farther should this thread have gone?

I am astonished to see an orthopedic surgeon saying this. He's right in so many aspects, but just needs to follow the logic *a little further*.

@NeurologistMom Yet, can its absence in serum really guarantee its absence in tissue? SARS2 is a Pisoniviricetes virus and at least some of that class partially deconstruct themselves (replicate with deletions) into persistent forms in tissue that are not picked up in blood, stool, csf,…

No virus in the brain. Still brain dysfunction. Patient serum alone can induce neural changes. Circulating signals could be sufficient to drive Long COVID symptoms. 🔗 biorxiv.org/content/10.648…

@TatianaRose25_ @dreamy_run @BShapiroMD Well, yes, but they confuse physical trauma (including genetic and infection outcomes) with any emotional trauma that might result from the impact on the family dynamic, and personal losses.

@dreamy_run @BShapiroMD Childhood trauma can cause your cervical spine from C0 to C7 to deteriorate so badly that you need posterior and and anterior fusion to prevent a patient from being bed bound. What an insult.

Over-diagnosis / misdiagnosis / self-diagnosis of EDS, MCAS, POTS, & Lyme is a real problem, and it would appear that there is little appetite by medical professionals to discuss this issue publicly.

@ErinAPN1 @BShapiroMD @knittynattie @awgaffney Or a simple Pisoniviricetes outbreak within a family, e.g. CVB or SARS2, that destroys fetal development, selectively maims & kills all generations with heterogeneous clinical presentations according to sex, age, genetics, environmental factors. And, track its effects over time.

@BShapiroMD @knittynattie @awgaffney Now do cancer. Or MS. Or ALS. Or asthma.

@AnilvanderZee @BShapiroMD @awgaffney "Developmental trauma, excessive stress, overstimulation" also sound like the consequences of family infections with pathogens that cause fetal developmental abnormalities, deaths and illnesses across generations, encephalomyelopathies and other conditions that need less "noise".

@BShapiroMD @awgaffney You're a psychiatrist. People you see are not representative for the whole community. Furthermore, some may be risk factors for developing any disease, but a risk factor is not the same as a causal factor. As a MD u should know that as well...

@ThePEIMatrix The world is full of people who believe that while looking at, yet not seeing, the cases before them, even within their own families. The narrative you're repeating comes from the misinformation spread in the 1980s. Those conditions can be different effects from the same causes.

@GemzME The fact remains this is a western woman condition that we barely see anywhere else in the world. The same diagnostic criteria are used for EDS, POTS, ME/CFS, fibromyalgia. It’s all just people with no ability to cope with life.

Post viral syndrome followed by an inability to get the fuck on with your life isn’t a medical condition that will be solved by a magic pill. You have a mental health disorder, you’re a white women from the west. You make less than 50k a year and you can’t fathom life

@StevenShorrock The diagnostic shift from the ME of outbreaks to PVFS, PIFS, CFS and the retention of these concepts for CFS/ME, ME/CFS, ME-ICC, and SEID made it almost inevitable that severity would be the disease proxy for this new concept of symptoms without adequate testing. Ethics? Hardly!

There’s no ethical basis for waiting until someone has lost 50% functinality to diagnose any illness, surely? #MECFS

Outbreak of sense in Norway re ME/CFS 🇳🇴: “There is no professional basis for waiting to diagnose ME until there is a 50% reduction in functional capacity ... Worsening must be avoided.”

@SalvMattera @CovidSolidarit1 And, it IS new, but it is also the newest member of a recently-formed ICTV class and phylum whose founding members have a much longer history.

@SalvMattera @CovidSolidarit1 The problem is in criteria created by those who have no idea what the disease entity is. Long Covid is "simply" the long-term outcomes of a SARS2 infection that evolve with time—the permutations are many, diseases are individual. mdpi.com/2673-8112/6/3/… who.int/standards/clas…

I think most people with Long COVID feel something is wrong with the research, the advocacy, the diagnostic system, but they can't articulate what. They cycle through diagnoses and feel confused. They see studies announced with fanfare but nothing ever happens. They watch advocacy organizations partner with supplement companies and feel uneasy. They sense the absorption happening by the larger chronic illness constellation, but don't have the vocabulary to name it.

@sunsopeningband @loscharlos Abnormal from the human perspective. Business as usual from the virus POV. And if the cold virus persists… pubmed.ncbi.nlm.nih.gov/14570830/

@Molbaas Trudy Chalder: coffi-collaborative.com/scientific-adv… oslonetwork.no/about-us

This is what desperation to remain relevant looks like: Don't treat, and traumatize, people with chronic fatigue, put them in a scanner, let them recall bad memories, of course find their brains now process stuff differently, suggest they are ME/CFS patients, 1-2

@PaulGadsden82 The other serotype is less idyllic: people who were forced to continue overexertion into long-term rolling PEM to survive until they dropped from visibility.

I don't understand this idea that people with ME were highly driven and motivated before illness. Surely it is a stereotype that needs to die? It most certainly doesn't describe me at all.

@ThePEIMatrix Prevalence pmc.ncbi.nlm.nih.gov/articles/PMC79… History annualreviews.org/content/journa… link.springer.com/article/10.100… pmc.ncbi.nlm.nih.gov/articles/PMC21… One of the genetic components pmc.ncbi.nlm.nih.gov/articles/PMC10… pmc.ncbi.nlm.nih.gov/articles/PMC95…

@ThePEIMatrix Not all, just as not all poliovirus infections required iron lungs for survival. It's a spectrum. A female pilot, for example, might see it begin as slowed reaction times, more injuries and lower rhabdo threshold, difficulties with word-finding, math problems, emotional control.

@GemzME The human condition. I somehow doubt that if I put all the ME/CFS people on the planet in a stadium and left them alone they would all just die. The fact is western society has become a crutch. Too afraid to hurt peoples feelings.

@ThePEIMatrix Semantics. You mean post-viral syndrome, or some other PVS? PVFS is generally self-limiting over a few years. The broader PVS can encompass other conditions and timeframes. ME was coined in the UK after mostly EU outbreaks in hospitals and schools, so there is a reporting bias.

@ThePEIMatrix HIV is an interesting case. It often appears in papers that include EVs (structural and functional overlaps). Here, CVA9 and E11 are serotypes in the ME-associated species. link.springer.com/article/10.100… Cure, as with polio. Grief, self pity, and advocacy, are not mutually exclusive.

@GemzME PVS does need further study, but the idealism that somehow there should be an instant cure is asinine. We can’t even cure HIV. But here’s the thing following in self pity doesn’t solve anything.