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

[jonathan_h]

Don't get stuck in "I know what's best for me" mode when it comes to treating your complex disease. Ask yourself? Is my approach working? Be honest. If you are not increasing your baseline your approach is not working. @remissionbiome: It works (most of the time).

I see this tweet as making these problematic claims:

• You don’t know what’s best for yourself.

• Baseline-raising ME/CFS treatment exists for those who want it.

• remissionbiome’s protocol works for most people.

It feels manipulative to engender self doubt in people before plugging your protocol? And her certainty it helps most people doesn’t mean much to me given how every ME specialist with a different pet protocol is convinced of this exact thing (by their clinical experience). I wonder how deeply rituximab would be embedded in the current ME treatment landscape had Fluge and Mella not done their phase 3 trial .

 

[Ash]

I see this tweet as making these problematic claims:

• You don’t know what’s best for yourself.

• Baseline-raising ME/CFS treatment exists for those who want it.

• remissionbiome’s protocol works for most people.

It feels manipulative to engender self doubt in people before plugging your protocol? And her certainty it helps most people doesn’t mean much to me given how every ME specialist with a different pet protocol is convinced of this exact thing (by their clinical experience). I wonder how deeply rituximab would be embedded in the current ME treatment landscape had Fluge and Mella not done their phase 3 trial .

Yes.

I think the difficulty is when a sufferer feels better they will attribute that to a specific thing they tried, I think that’s fine. I think it’s unavoidable. At the level of individual experience it’s useful, at this stage nothing better is on offer. We have instincts about our own bodies that guide us where other knowledge may not.

But what she does here is no longer at the level of the individual. Nor is it spreading the word on something potentially useful. Its selling her product, making claim to all the knowledge for herself. On both her own and your behalf. But then she’s gonna sell that knowledge back to you. Should you feel reluctant to be co-opted into this unfavourable transaction, she will apply some weight some pressure. So even if her product turns out to be testable and successful you’d have to undergo a humiliating subjugation in order to partake of the rewards. As well as to be financially stretched,

My fear is that with an attitude like hers she will go far. We will have to deal with Optimum Nutrition style longevity and forever be assaulted by glossy and gloating advertorials taunting us and goading us into parting with our money.

 

[Revel]

Remission Biome, "standing on the shoulders of giants":

 

[cfsandmore]

Remission Biome, "standing on the shoulders of giants":

View attachment 20367

That’s the appeal to authority fallacy.
https://en.wikipedia.org/wiki/Argument_from_authority

The argument is weak, that’s why Dr.T is appealing to Ron Davis. DrT has no evidence, nothing close to passing peer review or qualifying for a large blinded study.

Sadly Davis has no evidence of how the illness is reversible. Until Davis finds evidence he is telling us what he thinks or hopes to be true. (I hope ME is reversible too. I also took loads of supplements years ago, I’m still diseased.)

 

[EndME]

When basically everything you do can change Gene expression so you use that as reasoning for anything being a treatment for ME/CFS.

Next up: Farts change gene expression, so farting has to be a treatment for ME/CFS.

 

[Solstice]

View attachment 20372

When basically everything you do can change Gene expression so you use that as reasoning for anything being a treatment for ME/CFS.

Next up: Farts change gene expression, so farting has to be a treatment for ME/CFS.

Hitting up the dairy isle at the supermarket this afternoon!

 

[Tia]

I wonder how deeply rituximab would be embedded in the current ME treatment landscape had Fluge and Mella not done their phase 3 trial .

This is such a good point. It was going that way before the phase 3 results came out. So very glad they did the phase 3. The rituximab thing was such a good learning experience for me in helping me understand the importance of really tight, high quality trials (I don't have a science background). I think about it often when tempted to believe some new theory or other. Rarely get tempted any more - can see the red flags a mile away.

 

[Andy]

"Antibiotic use can increase chances of MCAS flares. MCAS flares can also lead to polyreactivity and loss of oral tolerance. Planning for negative side-effects is an key part of the @remissionbiome safety plan."

https://x.com/chydorina/status/1708585382013792320?s=20

First do no harm, unless you are someone on Twitter when you can claim that harms should be planned for by the participant in the drug regime that you have concocted.

 

[Trish]

My response on Twitter.

Copy of tweet:

Do you have ethics committee approval for your study, insurance against being sued by people harmed by your protocol, and a peer reviewed published protocol for your cllnical trial with specified outcome measures?

Expect me to be blocked shortly. I'm already blocked by the main remission biome account.

Edit: I have since left Twitter.

 

[EndME]

They have recently reiterated how they are part of Ancestral Health. In fact two of them are even on the board (Isabel Burnett and Tess Falor) of this organisation.

Organisations such as Ancestral Health are the playground for pseudoscientists like Terry Wahls ("buy my diet protocol which cures MS") for whom the RemissionBiome team has in the past expressed their admiration. Similar to other organisations they also have a junkyard journal to strengthen their "credibility". The focus of this specific organisation seems to be that the Paleo diets holds all the keys that modern medicine doesn't hold.

 

[Dom]

Patient blaming has sadly become part of the underlying conversation from RB. However it's only coming from Tamara not Tess. Which says a lot.

It's not right to blame patients for a disease they did not ask for and where there often neglected by the medical community. But primarily governments with the power to invest in trials. So I take massive issue with patients being blamed. I also worry that this will send research back even further by fuelling anti ME incentives and ideas that we "go rogue". Essentially more patient blaming.

It's borderline cohersion anyway to suggest patients need to get on and "be honest" so very patronising. I know some good people in the UK doing this protocol.

I feel horrendous on some of the RB prep items. Bpc-157 is very bad news.

I also have seen only one data slide which looks amazing I'm not going to lie but I haven't seen anything else.

Also as others have said lots of over lapping treatments. Then there's the danger to a patients fragile body which means they could simply get worse from it. Although I hope not.

Thanks for the thread good updates.

 

[Trish]

The one who calls herself DrT is all over the bluesky alternative to Twitter too, with strings of posts about the protocol and boasts about lots of people doing it and lots of donations. It's really out of hand, and sadly some people are desperate enough to think she's a real doctor I suspect. (She has a PhD in Ecology)
Edit: She's now trying to get more teens and young adults to join the experimenting.

 

[EndME]

The one who calls herself DrT is all over the bluesky alternative to Twitter too, with strings of posts about the protocol and boasts about lots of people doing it and lots of donations. It's really out of hand, and sadly some people are desperate enough to think she's a real doctor I suspect. (She has a PhD in Ecology)
Edit: She's now trying to get more teens and young adults to join the experimenting.

I guess "Tik Tok Biotic" has a ring to it. And since no medical assessment or even a diagnosis is required to participate you can always end up claming anything, present whatever data snippets you want and for any non-improvements "you didn't do the complete protocol" or "our protocol is now optimised" will always be the go-to answer.

This truely fuels the anti-Long Covid and anti-ME/CFS incentives.

 

[Dom]

Tbh this could backfire badly on them. Get enough people unethically sourced and you might well get a lawsuit.

Also they talk about patients become true advocates and essentially building a group of people to push the protocol that way too. Which I didn't like the language use of. It felt very off and like they were using people.

They know remission biome doesn't always work but one of my issues is occult infections. Like @Joan Crawford was saying you might respond but only because you've got an unknown occult infection. Give the right antibiotic to a patient with an infection like that and they should respond and it can cause remission.

Whereas if the patient just had protein issues as per the recent research then it may just make them a lot sicker.

Also I'd recommend reading missing microbes. A truly excellent book that explains the dangers of antibiotics and low dose antibiotics on species extinction (sadly I think I may fall into that category) and loss of volume of bacteria in the gut (low dose antibiotics.). A really fascinating read thoroughly recommended. For anyone that can still read!

 

[LCghost]

"Scaling" "Growing the business"

 

[Jaybee00]

“And, she's @chydorina's sister.”

Great, so nepotism as well!!

 

[LCghost]

There were more concerning posts yesterday (see whole thread)

Now "DR T" is implying that even if you don't feel better or feel worse from the supplements, it doesn't mean that they aren't working. You just have to listen to her that she understands what they are doing in your body and it might take YEARS of taking them for you to actually feel better.

I see this tweet as making these problematic claims:

• You don’t know what’s best for yourself.

• Baseline-raising ME/CFS treatment exists for those who want it.

• remissionbiome’s protocol works for most people.

It feels manipulative to engender self doubt in people before plugging your protocol? And her certainty it helps most people doesn’t mean much to me given how every ME specialist with a different pet protocol is convinced of this exact thing (by their clinical experience). I wonder how deeply rituximab would be embedded in the current ME treatment landscape had Fluge and Mella not done their phase 3 trial .

 

[JemPD]

Typical 'alternative' health practitioner's approach.

If you feel better while taking the supplements = it must be the supplements that are responsible, because correlation equals causation

If you feel nothing while on them = its still working, because they know it works.
If you feel dreadful with the supplements = that means its *definitely* working.

If you take the supplements for years and nothing happens except a giant hole in your bank balance = thats the sign that its categorically worked, but you just cant tell because these things are subtle, and its probably the __<insert anything here>__, that is masking their positive effect.

If something gets actually damaged while you're on the supplements & you get harmed = well it cant have been the supplements because.... thats right, you guessed it... suddenly now it suits them, correlation suddenly doesnt equal causation!

 

[Barry]

This happened to me a few years ago, but didn't last long. I described my experience in this post :

https://www.s4me.info/threads/patho...fs-discussion-thread.13372/page-3#post-269428

Happened to me as well, many years ago, but didn’t recur with other or the same antibiotics over the next couple years. That seems to be the norm when I’ve researched this. The partial remission I experienced was part of what led me to try faecal transplants, which was the most disastrous treatment I’ve tried by a long margin. I still haven’t regained what I’ve lost ten years later and I still struggle to cope with that loss. I mentioned this harm to them on Twitter and they had little interest…

I don’t disagree with this but I still feel it’s worth looking into—one remission>none.

It feels to me there is enough anecdotal evidence around to justify a proper clinical trial to be considered, or at least a proper scientific study of any evidence to date. I imagine much of medical scientific progress starts out by people observing unexpected correlations, and then doing proper trials to better understand if any relationships really do exist or not.

I do worry when possible clues are ignored, because people maybe conflate the potential high value of the clues themselves with the very low value of the pseudo-science that presumes to understand and interpret those clues; the two things should not be confused.

Even though the antibiotic effect only happens rarely, and for any one patient is a one-hit wonder, it does feel like it should be worthy of further scientific investigation. It just might help so many people. Just because the observed effect may be rare does not necessarily mean any benefits resulting from scientific study would be confined to a minority.

 

[Trish]

I don't think there's any justification for a clinical trial for any antibiotic for ME/CFS. Antibiotics are over used already, and should be used only for bacterial infections.

They don't seem to be considering in their interpretation of their 'remissions' that many pwME report a temporary lifting or improvement of ME symptoms when they have an infection. It could be the infection that led to the temporary 'remission' rather than the antibiotic prescribed to treat it, or some other factor, such as the infection led to significantly increased resting or change in diet or a host of other factors, including coincidence.