iiinova — where your digital self keeps evolving

B Rob @alpineopen.bsky.social · 09/07/2026

I having a chairlift installed as I can't get up my stairs either. Never thought or knew ME/CFS would worsen. But that's because an ignorant doctor told me it didn't worsen.

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B Rob @alpineopen.bsky.social · 09/07/2026

Meaning lots of funding... but how did they fail so miserably in phase 3 compared to phase 2? I predict Daratumumab will be the same scenario. A good lot of funding lots of time wasted on studies and another fail.

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B Rob @alpineopen.bsky.social · 09/07/2026

I'm a tad sceptical of Fluge & co. As the history of Rituxamab, we have the exact same scenario repeating itself now. Almost the same number of successful patients being around 60% in the first pilot trial. From memory they got around to 67% and 2 other phase 2 trials. Yet failed in phase 3 😢

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Robert Reich @rbreich.bsky.social · 10/05/2025

Trump says Republicans should "probably not" increase taxes on the rich in their forthcoming tax bill. Meanwhile, his tariffs will hit poor and working-class Americans the hardest. "Party of the working class."

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B Rob @alpineopen.bsky.social · 07/05/2025

Good to see. Interestingly this is well established in ME/CFS too. It’s a shame the original ME/CFS researchers didn’t get the funding LC got as we would all be years ahead by now

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B Rob @alpineopen.bsky.social · 05/04/2025

I bet if one of their family members had #LongCovid they wouldn’t be cutting funding

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Alt National Park Service @altnps.bsky.social · 04/04/2025

The entire permanent staff of the Division of Environmental Health Science and Practice was laid off. This division addresses issues such as asthma and air pollution, climate change and health, childhood lead poisoning, and cancer clusters.

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B Rob @alpineopen.bsky.social · 30/03/2025

True for some older drugs, although there’s some immune drugs like JAK STAT inhibitors and mTOR inhibitors that are may potential that are still under patent. Also there’s several new anti cancer drugs that hypothetically could work too.

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B Rob @alpineopen.bsky.social · 19/03/2025

An interesting read. Higher levels of EBV and herpes virus (as already known) but the hypothesis of IFNa auto antibodies wasn’t apparent #mecfs #LongCovid #peME #LongCovidAwareness www.mdpi.com/1999-4915/17...

mdpi.com

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Robert Reich @rbreich.bsky.social · 07/03/2025

Nothing will ever trickle down.

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B Rob @alpineopen.bsky.social · 23/02/2025

Unfortunately the pharmaceutical companies can’t see that if one of their drugs helped improve or even cure #longCovid or #MECFS then they would become profit even more massively, with virtually no cost to them. But for some reason they have the heads in the sand cen.acs.org/pharmaceutic...

cen.acs.org

Long COVID studies stymied by pharma’s lack of cooperation

Academic researchers want to repurpose drugs for the condition. Manufacturers aren’t supplying them

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B Rob @alpineopen.bsky.social · 02/02/2025

I’ll applaud anyone who breaks decades of pushing Post Viral illness to the back of the queue & into psychiatry. Finally it’s our time to get what we have been asking so long for! As for RFK I know he’s crazy & wrong in many areas, but I’m sick of waiting for the NIH. I’ve been Sick since 1989!!

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B Rob @alpineopen.bsky.social · 02/02/2025

‘Post Exertional Malaise’ PEM a term used by these researchers isn’t new, ME/CFS isn’t new. As someone mentioned in the comments SARS-CoV back in 2002-03 wasn’t new. Most patients with ongoing PEM have ME/CFS What’s new is the previously ignorant medical & research community is finally waking up

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B Rob @alpineopen.bsky.social · 02/02/2025

RFK said in his own podcast that he believes Long Covid & ME/CFS is caused by toxins and vaccines. I think we will see more research into these diseases than the status quo at NIH ever did. Yes RFK is a lunatic but post viral illness will probably be the one thing to get extra attention

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B Rob @alpineopen.bsky.social · 02/02/2025

I sent him that study in 2023 via email & he replied that (but was longer, so I’d made it concise to fit) He believes the problem it’s upstream & to do with extracellular ATP signalling. He believes that’s where the Cell Danger Response turns on. Why it’s permanently switched on is the mystery

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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 01/02/2025

Thanks for your continuing support, George. Please could you encourage your followers to sign and share the S4ME petition which calls for Cochrane to withdraw its harmful review of exercise therapy for CFS? www.change.org/p/cochrane-w...

change.org

Sign the Petition

Cochrane: Withdraw the harmful 2019/2024 Exercise therapy for CFS review

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Robert Reich @rbreich.bsky.social · 01/02/2025

Replacing civil servants with loyalists. Upending the lives of millions who rely on federal programs. Grotesquely blaming "DEI" for disaster. Trump wants to consolidate power through divide-and-conquer tactics. We must stand together and fight back. youtu.be/wSYbNcjGjhA?...

youtu.be

Fighting Back Against Trump II | The Coffee Klatch with Robert Reich

YouTube video by Robert Reich

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Billy Hanlon @bhanlon15.bsky.social · 01/02/2025

Liverpool Echo: ''I used to travel the world but now I'm 38 and trapped in my own home'' "In 2020 I got unwell with covid and developed ME [myalgic encephalomyelitis] and long covid. That gave me chronic levels of fatigue and I ended up bed bound." www.liverpoolecho.co.uk/news/liverpo...

liverpoolecho.co.uk

'I used to travel the world. Now I'm 38 and can't leave my home'

Linka can only experience the outside world by looking at her garden through the window

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B Rob @alpineopen.bsky.social · 01/02/2025

I remember Robert Naviaux said back when this was published it was “in many ways old news” and that “There is much more to this story than just WASF3. Ultimately, this traces back to ATP-signaling that triggers the cascade and maintains the CDR during ME/CFS and Long Covid”

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B Rob @alpineopen.bsky.social · 01/02/2025

Thanks. I need to find the exact date in October or early November 2020 that Garner made contact with the Mind Therapist. As once I have that, with his email to me I can sink him for lying. Hopefully someone out there will know

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B Rob @alpineopen.bsky.social · 01/02/2025

@davetuller1.bsky.social I wonder who that South African is? And what side of the fence he was on. It first sounded like he was on our side. But then he mentions he and White were the 2 psychiatrists.

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B Rob @alpineopen.bsky.social · 01/02/2025

Yes he got sick March 2020, & wrote that on 5th Oct 2020. The way it’s written shows he’s been doing that prior. Maybe Sept. clearly the PEM had gone to do and say he doesn’t have problems to push through. Feel free to send that to journalists in the Uk who’ interested. I’ll supply the email thread

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B Rob @alpineopen.bsky.social · 01/02/2025

Here’s an email Paul sent me prior to the mind therapist encounter. Yet he lied to the BJM and everyone else. As that email proves he was recovering well and could ‘push through’ unlike most ME/CFS and LC patients

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B Rob @alpineopen.bsky.social · 01/02/2025

I’ve wondered if ME/CFS & now Long Covid is actually autoantibodies (molecular mimicry via an infectious hit) attacking a random molecule released by cellular exertion, like a metabolite. As the more exertion the bigger the crash. Also the long delay to PEM suggests build up of autoantibodies.

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B Rob @alpineopen.bsky.social · 01/02/2025

However that said, I think for many other health issues like vaccines, it’s going to take the deaths of many innocent children before he gets the boot. There’s a catastrophe brewing

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B Rob @alpineopen.bsky.social · 01/02/2025

There’s a video (I can’t find) from RFK’s podcast. In it he was interested in ME/CFS & LC. He mentioned toxins & of course also blamed vaccines. He was talking about research (I can’t remember what type). Although he’s nuts, It gave me hope at least post viral illness will finally get NIH attention

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B Rob @alpineopen.bsky.social · 01/02/2025

Yep when Paul Garner lied through his teeth about how he recovered from Long Covid via mind therapy (yet had recovered prior). And knowing he was a Cochrane member and a fan of Simon Wessely’s behaviour model, I thought here we go again with that old boys club

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B Rob @alpineopen.bsky.social · 22/01/2025

‘Consumer Labs’ (CL) is a good source for being informed on a surprisingly high number of recalls and warnings per week of supplements, herbs, spices, ground seeds and protein powders. And counterfeits. Many are sold on Amazon. CL also have all the health facts on foods.

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B Rob @alpineopen.bsky.social · 16/01/2025

At least some of the HIV medicines as I’ve heard some people with ME/CFS who have tried them recovered

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B Rob @alpineopen.bsky.social · 16/01/2025

Well worth signing against the scientific fraud done by the Pace Trial authors, and by their boyfriends at Cochrane. They say “Trust the science” We say “Test the science”

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Robert Reich @rbreich.bsky.social · 13/01/2025

Jeff Bezos' Washington Post editorial board has endorsed Pam Bondi as a "qualified" and "serious" pick for Attorney General. Nowhere in the endorsement did they mention that she's a former Amazon lobbyist. Billionaire control of our media is a threat to democracy.

rollingstone.com

Jeff Bezos' Editorial Board Calls Trump's AG Pick, Who Lobbied for Amazon, 'Qualified'

The Washington Post's editorial board gave a thumbs up for Trump's attorney general pick Pam Bondi, who previously lobbied for Amazon.

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Prof Danny Altmann @daltmann.bsky.social · 13/01/2025

Long Covid in Children - we’re still looking for families who’d like to take part and help in this research. Please get in touch

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Will Bunch @willbunch.bsky.social · 08/01/2025

Jimmy Carter, a visionary on ending fossil fuels, put solar panels on the White House. Big Oil-backed Ronald Reagan ousted Carter in 1980 and ripped them out Tonight, as Carter lies in in state in the Capitol, a climate-fueled wildfire is destroying Reagan's former hometown of Pacific Palisades

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B Rob @alpineopen.bsky.social · 05/01/2025

Hope for #MECFS #LongCovid Interesting to again see T cell exhaustion, Interferon signalling, & viral persistence as suspects in post viral illness, as is the ‘Innate Immune Response’ mTOR inhibitors and HIV antivirals are suggested youtu.be/UnFZ9ZyJ1nI?...

youtu.be

Long COVID Research & Potential Treatments Part 1 (E27) Ft. Prof David Putrino

YouTube video by Long Covid The Answers

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B Rob @alpineopen.bsky.social · 04/01/2025

Does your pharmacy deliver? Some often do the rounds in the suburb as many elderly can’t collect anyway. It’s free too as my pharmacist is a good person. And u bet others are too

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B Rob @alpineopen.bsky.social · 03/01/2025

85% of #LongCovid patients improved on this treatment (in the trial). Hopefully it can be repeated by other researchers and we see research discover why there’s improvement #pwME #MECFS sleepreviewmag.com/sleep-treatm...

sleepreviewmag.com

Human Umbilical Cord Blood Infusion Improves Fatigue in Long-COVID

Clinical trial results show that HPC, cord blood effectively treats post-COVID fatigue, with 85% of patients experiencing relief.

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B Rob @alpineopen.bsky.social · 02/01/2025

Researchers Email address BIDMC-CVVRCVVRTRIALS@bidmc.harvard.edu

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B Rob @alpineopen.bsky.social · 02/01/2025

Fantastic news to see a drug trial in #LongCovid I didn’t see PEM mentioned though. So email the researchers requesting PEM as criteria. Otherwise they will be too broad & the trial may not reach statistical significance #MECFS 1/2 clinicaltrials.gov/study/NCT065...

clinicaltrials.gov

ClinicalTrials.gov

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B Rob @alpineopen.bsky.social · 21/12/2024

I am hesitantly optimistic about the RFK situation for ME/CFS, (even though he’s the wrong person for the NIH), he did say in an interview that he wants more research into ME/CFS and long covid. I can’t find it now, but was talking about it on his own YouTube channel

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B Rob @alpineopen.bsky.social · 20/12/2024

Most probably we would have had a handful of treatments for #LondCovid #MECFS by the time the pandemic arrived …

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B Rob @alpineopen.bsky.social · 14/12/2024

Good to see Nath explain things, after the controversy of ‘Effort Preference’ although not a full answer, at least the rest of the interview was interesting #MECFS #LongCovid

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B Rob @alpineopen.bsky.social · 13/12/2024

No need to get personal. Finding other wrongs doesn’t make it right now does it. Much of that abuse grew from frustrations often fuelled by the snide remarks and smugness of the Far Left. Neither side was right in the way they treated each other.

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B Rob @alpineopen.bsky.social · 11/12/2024

Even mild ME has a huge impact on life. ‘Post Exertional Malaise’ (PEM) the hallmark symptom of the disease & a requirement symptom for diagnosis, really can’t be denied or ignored by the sufferer. PEM is very noticeable even in mild ME. Anyone who gets PEM knows they are sick

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B Rob @alpineopen.bsky.social · 09/12/2024

Must be very mild not to notice. Long Covid that fits the criteria for ME/CFS is terribly life altering. This is why subgroups are needed to pry apart who’s got what, instead of the current dumping of money into research that’s too broad that progress goes nowhere

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B Rob @alpineopen.bsky.social · 09/12/2024

Even though RFK is going to make a mess of things, he’s probably going to be good for ME/CFS research. As he believes they are vaccine related. Which we know is rare but has happened. And certainly made many who have the disease relapse myself included (our immune system’s fault not the vaccine)

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