The Observer/Guardian article: Does the microbiome hold the key to chronic fatigue? About patient led 'research' group Remission Biome.

This is peak shithousery commonly witnessed amongst such groups financially profiting from the products they advertise:
I am part of said group -> Everything they do is perfect, it's "science", no questions allowed.
I am not part of said group anymore -> Everything they do is harmful, follow me.

www.twitter.com/chydorina/status/1740082619507986762

 

There is also a certain arrogance of people who have been sick for 5 minutes to assume that their half-baked ideas such as abx haven't been tried thousands of times before (with disastrous results).

 

I'm now convinced after that post above that Dr T is under NDA as well and so can't say much at all. I was quite surprised by the post though wasn't expecting it.

I've noticed that they don't post on mastodon anymore and seem to use twitter more overall. I saw another post by Dr T where she hints that several people on the protocol have done very badly on the antibiotics, possible breach of NDA if there was one (not sure!) but one of the reasons I was never going to do it was because antibiotics make me feel ten times worse. That and my microbiome keeps loosing strains, I lost akkermansia two months ago.

Agree Sid, these things have often been tried before. It's like tenofovir, Dr Weil and Chia stopped using it because they had no biomarker to predict who would benefit from it.

 

Merged thread

Quotes:

Patient-researchers and their scientist collaborators say the patient-led approach has big potential to move chronic disease research forward, making it more informed, quicker and more poised to directly improve patients’ lives.

Projects like Remission Biome “are going to change how research into these chronic, multi-organ-system diseases is going to be done,” Hoffman says. The approach may someday become a standard part of more mainstream research.

...

ME/CFS patients have been particularly motivated to pursue their own research, says Emily Taylor, vice president of advocacy and engagement at the ME/CFS organization Solve M.E. One key motivator is “the failure of the medical establishment to provide any sort of support or treatment or quality of life improvements for this population,” she says. Previous ME/CFS research done without patient input, such as a now-debunked clinical trial examining exercise as a potential treatment, has led patients to push back with their own studies.

...

Patient-led research “moves orders of magnitude faster than traditional modes of research,” Putrino says, because it focuses on the questions that are of greatest concern to patients, leading more quickly to impactful results. Patient-led groups may also be able to start new studies more quickly than institutions that have to, say, go through formal academic procedures, he says. In that way, this research is similar to how start-ups move faster than large corporations.

In addition, patients can help scientists design studies that are more likely to provide accurate results.

...

Advocates like Seltzer argue that patient-researchers are more incentivized than anyone to make sure their results are accurate. “If we’re wrong, we and people like us suffer,” she says.


https://www.sciencenews.org/article/patient-led-research-health-medicine

 

https://twitter.com/user/status/1773853002610462766


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This is interesting.

https://twitter.com/user/status/1773112859720839664

 

Does this imyoo assay have any scientific validity or is it similar to those other assays that were used, for instance the biomesight assay that just measured crap?

I'm guessing self-sampling everything without standard procedures could add a lot of noise especially when you are still learning to do this you might do it different the first time and then change your methodology?

They also should have data for all their participants, them only posting this data makes it seem like an advertisement for imyoo more than anything.

 

No wonder she's been pushing it

 

That particular graph doesn't.

 

Also from today: