JellyBabyKid

Reader. Writer. Endless tea drinker. Whovian till I die. Trekkie. Activist. PwME. PTSD. Rock fan. OU grad (She/they)

[JellyBabyKid @JBKid7]

I wrote this....😀 https://t.co/GgwIjElPox

[Moodscope @Moodscope]

Good things come in furry packages. https://t.co/GYcbvdOrKu

[JellyBabyKid @JBKid7]

@1goodtern @threadreaderapp unroll please

[JellyBabyKid @JBKid7]

@Molbaas @AlanLevinovitz @threadreaderapp unroll please

[JellyBabyKid @JBKid7]

@1goodtern Interesting thread, thank you for sharing.

[JellyBabyKid @JBKid7]

@manruipa @threadreaderapp unroll please

[Manuel Ruiz @manruipa]

‼️⚠️Please read this until the end.

A widely shared article has presented a deeply misleading view of Long COVID, suggesting once again that cognitive behavioral therapy, exercise, and “mind-body” approaches may be the uncomfortable truth patients refuse to accept.

This needs to be challenged.

Not because the nervous system does not matter.
Not because psychological support cannot help.
But because confusing support with cure, physiology with psychology, and heterogeneity with “it might be in your head” is exactly how medicine has harmed post-infectious patients for decades.

There are articles about Long COVID that look like science journalism, but in reality they repackage, in modern language, a very old idea: if we do not fully understand a disease, maybe the problem is in the patient’s mind.

And that is not science. That is repeating history.

The article begins with a striking sentence:

“There isn’t a single approved pharmaceutical treatment, not even a test to verify the presence of the illness.”

This may sound forceful, but it is a very misleading way of presenting the problem.

The fact that there is still no drug specifically approved for Long COVID, or a single diagnostic test, does not mean that “nothing has been found.” It means that we are dealing with a heterogeneous disease, probably with several biological subgroups, and that medicine has not yet converted those findings into validated clinical tools.

“No single diagnostic biomarker” is not the same as “no biology.”

In just a few years, immunological, vascular, neurological, endocrine, and metabolic abnormalities have been described in subgroups of Long COVID patients: autonomic dysfunction, herpesvirus reactivations such as EBV/HHV-6, alterations in the cortisol axis, autoantibodies against GPCR receptors — including adrenergic and muscarinic receptors — persistent viral antigens, endothelial damage, muscle abnormalities after exertion, mitochondrial dysfunction, persistent inflammation, and differential immune changes.

Is everything settled? No.

Does that mean it is psychological? Also no.

Science does not work like that. Multiple sclerosis did not stop existing before we had MRI. Many autoimmune diseases do not show up in routine blood tests. If a complete blood count, a basic biochemistry panel, or an X-ray comes back “normal, normal, normal,” that does not prove the absence of disease. It only proves that you are looking with inadequate tools.

One of the article’s most serious mistakes is this: it confuses the absence of a simple clinical test with the absence of organic disease.

And that mistake has caused harm for decades.

The article also says:

“Almost $2 billion and half a decade of international effort have yielded little more than hypotheses about micro blood clots and spike proteins and mitochondrial dysfunction.”

No. That is not correct.

A hypothesis is a provisional explanation. But when you compare patients and controls and find significant differences in muscle tissue, metabolism, response to exertion, immune biomarkers, viral antigens, autoantibodies, or vascular dysfunction, you are no longer talking about “little more than hypotheses.” You are talking about lines of biomedical evidence that still need to be organized, replicated, stratified, and translated into treatments.

That is not scientific failure. That is research into a complex and new disease.

🔵Continued in the next post.👇🏻
(1/6)

[Carole Bruce @CaroleBruce17]

The Heritage study funded by the government states the annual cost to the U.K. economy from #ME and #LongCovid exceeds £12 billion.
That’s £32.8 million a day to the U.K. economy.

Yesterday they pledged £4.75 million for research.

This makes no economic nor humanitarian sense.

[Aaron (Long Covid + ME billboards) @Aaronca11]

My old account is gone permanently due to inactivity for 30 days so I lost all my connections to the #LongCovid and #MECFS community.

Need to get following everyone again…

[JellyBabyKid @JBKid7]

@RestIsPolitics Thank you 👍

[JellyBabyKid @JBKid7]

Good morning @RestIsPolitics team,
Will there be a post local elections podcast today? Many thanks.

[JellyBabyKid @JBKid7]

@Naomi_D_Harvey I feel that; almost two decades with this illness, and now getting to a stage where change or treatment is unlikely in my lifetime is hard to accept, especially after so much work to try to push for change.

[Carole Bruce @CaroleBruce17]

Congratulations to @NickyProctor who just spoke most honestly and eloquently on BBC 4’s Feedback about the recent episode of Radical where Amal Rajan interviewed Suzanne O’Sullivan about her book and didn’t challenge her appalling views on #LongCovid. Thank you so much Nicky.

[JellyBabyKid @JBKid7]

I think our benefits system should treat us all with dignity and respect, not suspicion. I added my name to this open letter to Pat McFadden. Will you join me to send a clear message to government? Add your name to help #StopTheStigma and #FixTheSystem. https://t.co/TjIrDCsfnx

[JellyBabyKid @JBKid7]

@_Lucibee @threadreaderapp unroll please

[Tessa Munt MP 🔸 @tessamunt]

June 30 + 22…
🥳 I’m hugely relieved that DHSC is apparently publishing the Final Delivery Plan today. But it’s contemptuous that it is only being released as the long Summer Recess starts, depriving MPs of the opportunity for proper scrutiny.

https://t.co/DBcgmUZBh7

[CJB @ChrisjbofYorks]

@tessamunt @HelenMorganMP @wesstreeting I’m glad the #infectedbloodscandal victims are finally getting somewhere,I’m glad the #PostOfficeScandal victims are finally getting somewhere,but when will the victims of the #GreatestMEdicalScandal finally get somewhere?!When will we get our justice,treatments,acknowledgment?!

[Andy Burnham @AndyBurnhamGM]

Whatever people’s views about the concessions, surely everyone can see the process here is ALL wrong?

Third Reading in eight days?

A timetable like that diminishes the role of MPs in getting this legislation right, shuts out disabled people and puts too many at risk.

[Dr Jay Watts @Shrink_at_Large]

Just to be very clear, the amended and then amended again ‘pathways to work’ green paper remains an undemocratic travesty that will push 100,000s into worse precarity and cause huge mental and physical damage. It is vital that it is voted down. #TakingThePIP

[JellyBabyKid @JBKid7]

What the hell just happened?
What did they vote for?

#Taking

[Dr Jay Watts @Shrink_at_Large]

NEW YouGov poll:

Most Britons oppose cutting disability benefits.

🔹 53% oppose any cuts to support for disabled people who can work.
🔹 74% oppose cuts hitting those who can’t work.

@UKLabour, whose side are you on?

#TakingThePIP https://t.co/ya3CDFlQP3

[Dr Jay Watts @Shrink_at_Large]

A lot of people end up in hospital, get iller, self-harm more and some die by suicide if they need to appeal. This is not hyperbole, I can (literally) send you the ‘prevention of future deaths’ reports if a MP. Most cases fail at MR and have to go to tribunal. That takes a year.