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

[Ash]

She’s detoxing today

https://twitter.com/user/status/1699276139267830237

I did a detox once, I felt great after the first two weeks which were admittedly awful, it was a month long. I kept it up for another month or so after that because I felt so good. I remember that. But I’ve also never forgotten how much hard work it all was. You made me nostalgic but glad not to be on one.

 

[Lidia Thompson]

Well, they've just managed to raise nearly £300k!

 

[Lidia Thompson]

... and there's THIS:


Tess Falor apparently spoke briefly at the research collaborative conference #MECFS2023

 

[Jaybee00]

Well, they've just managed to raise nearly £300k!

Umm not sure how I feel about this.

 

[Solstice]

Umm not sure how I feel about this.

I think the money could've been better spent, doubt this is gonna turn up much results. Might help with advertizing.

 

[Trish]

Why would a donor give a quarter of a million dollars to a couple of patients experimenting with a random selection of treatments and encouraging others to do so in an unscientific experiment? I hope the money is tied to commitment to handing over the so called research to responsible clinicians and scientists who know how to run clinical trials sensibly and safely.

 

[Lidia Thompson]

Why would a donor give a quarter of a million dollars to a couple of patients experimenting with a random selection of treatments and encouraging others to do so in an unscientific experiment? I hope the money is tied to commitment to handing over the so called research to responsible clinicians and scientists who know how to run clinical trials sensibly and safely.

Indeed.

 

[Revel]

Reporting 80% of participants are showing improvement.

 

[Trish]

How not to run a clinical trial!

 

[EndME]

The donor that donated another 250K is Vitalik Buterin. He has also donated very large sums to PolyBio and the Patient-Led Research Collaborative. His key principles seem to be that everything is open source, is openly shared and a focus seems to be that progress should be quicker than going through usual grant processes. He doesn't mind spending money on a potential "black swan", as long as there is potential.

I cannot see how RemissionBiome succeeds in meeting any of those criteria.

None of their "data" is shared publicly, especially not any data after their first round of experiments which if you truely believe in what they do would actually be valuable for the second round of self-experimentation, their spendings aren't known at all, no researchers seem to be involved and in some instances they don't engage openly with questions about their work and instead block other patients.

For a patient project they seem to be very distanced from patients, at least from my perspective, whilst on the other hand they have many followers on Twitter on their various re-tweeting accounts and they really do have a lot fanboys and fangirls with different accounts even called "... @RemissionBiome fan".

I don't see them as a black swan either, but I suppose an investor might disagree. First they claimed diet cures ME, then they claimed it must be antibiotics, even though thousands have tried those and now it has to be "x-amount of supplements+antibiotics".

 

[Jaybee00]

How does this end?

https://twitter.com/user/status/1700952800392564820



The biggest mistake we have seen in @remissionbiome is not getting on the COMPLETE brain-gut axis prep protocol.

It all works together:
Apigenin
Rephyll
PEA
Tributyrin-x
S. boulardii
Align
D-lactate free probiotic blend
AOR Probiotic 3
ProdromeGlia
FibroProtek
ViralProtek

Dont pick and choose.

 

[Jaybee00]

https://twitter.com/user/status/1700971030700011686



we are still working hard behind the scenes to make the #thelighttest a reality.

Using photobiomodulation is great for mitochondria and neuroinflammation and traumatic brain injury.

Dose is really important - dont create excitocity in your brain!

 

[Revel]

This feels somewhat akin to patient blaming.

Like so many of us, I have self-experimented for decades. Now l'm broke, pretty much bedridden and just trying to make it through the day, both physically and mentally.

I am only too aware that my baseline is not increasing. If anything, l am deteriorating at an alarming rate of late, but it's not a stubborn choice l'm making. I'm doing the best that l can with no carer and limited funds.

 

[Hoopoe]

The biggest mistake we have seen in @remissionbiome is not getting on the COMPLETE brain-gut axis prep protocol.

It all works together:
Apigenin
Rephyll
PEA
Tributyrin-x
S. boulardii
Align
D-lactate free probiotic blend
AOR Probiotic 3
ProdromeGlia
FibroProtek
ViralProtek

People just don't have the money to spend so much on speculative treatments. The supplements on this list are easily costing several hundreds of € a month.

 

[Trish]

This feels somewhat akin to patient blaming.

Tweet quote:

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 find this quite shocking. This is a non-clinician advising a lot of very sick people to follow her path through expensive experiments with no foundation in research efficacy for pwME.

Tweet quote:

What treatment and behaviour changes am I testing this month? Water walking in pool (NO ARMS! just walking) Hot tub Body red light therapy (BioLight sleeping bag, crazy gift!) Infra-red Sauna http://Embrlabs.com (for hot flashes and sleep)
@remissionbiome

Tweet quote:

What have I added to my protocol this month? I am ALWAYS testing Inosine + Galantamine (SNS, sleep, brain) TUDCA (brain-gut) Propolis (mold, immune, Bee-o-pharm and http://kontak.it) Clemastine (brain, myelin) Binders/detox for mold and heavy metals
@remissionbiome

I have no problem with people choosing to spend vast amounts on their own money on unscientifically taking every supplement and alt med treatment they fancy trying. Their body, their choice.

But to publicise this as a sensible way forward for others, and to imply that others aren't trying enough things if their health isn't improving is shocking.

There is no evidence any of this is anything but an enormous waste of money. If someone promotes themselves as leading patient research, they really should learn the basics of how clincial trials need to be run if they are to produce anything but confusing noise where people's ups and downs in symptoms are more likely to be related to natural fluctuations and other factors such as whether they are pacing well than to any particular 'treatment'.

Add to that mixing so many different treatments all at the same time and it becomes impossible to tell whether there is actually anything in the mix or combination of treatments that may be leading to ups or downs in symptoms.

I hope people aren't harmed by taking all this stuff.

 

[Revel]

People just don't have the money to spend so much on speculative treatments. The supplements on this list are easily costing several hundreds of € a month.

Indeed. Also, some items on the full treatment list are not readily accessible in certain countries.

It was asked if some items could be left out, the answer was "no" and that the main reason why the protocol is not working for some is that the list was being modified, causing it to lose it's efficacy.

Another enquirer asked if a specific item could be left out because they had reacted adversely to it in the past. The answer was that there is no reason to expect a similar adverse reaction as long as the protocol groundwork is followed prior to commencing the full treatment list. Without further explanation from the enquirer, I would be concerned that the "adverse reaction" may have been an allergic response. Is it wise to suggest that there's no reason to expect it to happen again?

 

[Ash]

Tweet quote:

I find this quite shocking. This is a non-clinician advising a lot of very sick people to follow her path through expensive experiments with no foundation in research efficacy for pwME.


Tweet quote:




Tweet quote:


I have no problem with people choosing to spend vast amounts on their own money on unscientifically taking every supplement and alt med treatment they fancy trying. Their body, their choice.

But to publicise this as a sensible way forward for others, and to imply that others aren't trying enough things if their health isn't improving is shocking.

There is no evidence any of this is anything but an enormous waste of money. If someone promotes themselves as leading patient research, they really should learn the basics of how clincial trials need to be run if they are to produce anything but confusing noise where people's ups and downs in symptoms are more likely to be related to natural fluctuations and other factors such as whether they are pacing well than to any particular 'treatment'.

Add to that mixing so many different treatments all at the same time and it becomes impossible to tell whether there is actually anything in the mix or combination of treatments that may be leading to ups or downs in symptoms.

I hope people aren't harmed by taking all this stuff.

Absolute agreement. Still, I wondered if;

to imply that others aren't trying enough things if their health isn't improving

Was more to come right out and say?

Either way, you’re right of course it is shockingly exploitative.

 

[JemPD]

This feels somewhat akin to patient blaming.

Like so many of us, I have self-experimented for decades. Now l'm broke, pretty much bedridden and just trying to make it through the day, both physically and mentally.

I am only too aware that my baseline is not increasing. If anything, l am deteriorating at an alarming rate of late, but it's not a stubborn choice l'm making. I'm doing the best that l can with no carer and limited funds.

View attachment 20363

TBH my response when i read that my response was "oh ______ right off you sanctimonious _____"

I find this quite shocking. This is a non-clinician advising a lot of very sick people to follow her path through expensive experiments with no foundation in research efficacy for pwME.

exactly

I have no problem with people choosing to spend vast amounts on their own money on unscientifically taking every supplement and alt med treatment they fancy trying. Their body, their choice.

But to publicise this as a sensible way forward for others, and to imply that others aren't trying enough things if their health isn't improving is shocking.

There is no evidence any of this is anything but an enormous waste of money. If someone promotes themselves as leading patient research, they really should learn the basics of how clincial trials need to be run if they are to produce anything but confusing noise where people's ups and downs in symptoms are more likely to be related to natural fluctuations and other factors such as whether they are pacing well than to any particular 'treatment'.

couldnt agree more.

 

[Arnie Pye]

Off topic...

In those long lists of supplements there is only one I've heard of and tried, but my reasons for doing so had nothing to do with ME or anything related to ME. I tried propolis because I read somewhere it helps some people with mouth ulcers. Since I suffer with these almost 100% of the time, they cause lots of pain, doctors don't take them seriously, desperation set in years ago, and propolis is quite cheap by supplement standards, I decided to give it a go. And to my surprise, for me at least it has made a HUGE improvement in my ulcers. The number I get has reduced and the ones I do get are smaller, last less time than previously, and don't cause as much pain.

I suspect that if I knew the cause of my ulcers this benefit of propolis might make sense, but since I don't I just accept that it helps and keep my fingers crossed it continues to help and I don't develop an allergy to it or something equally annoying.

 

[Solstice]

Tweet quote:

I find this quite shocking. This is a non-clinician advising a lot of very sick people to follow her path through expensive experiments with no foundation in research efficacy for pwME.


Tweet quote:




Tweet quote:


I have no problem with people choosing to spend vast amounts on their own money on unscientifically taking every supplement and alt med treatment they fancy trying. Their body, their choice.

But to publicise this as a sensible way forward for others, and to imply that others aren't trying enough things if their health isn't improving is shocking.

There is no evidence any of this is anything but an enormous waste of money. If someone promotes themselves as leading patient research, they really should learn the basics of how clincial trials need to be run if they are to produce anything but confusing noise where people's ups and downs in symptoms are more likely to be related to natural fluctuations and other factors such as whether they are pacing well than to any particular 'treatment'.

Add to that mixing so many different treatments all at the same time and it becomes impossible to tell whether there is actually anything in the mix or combination of treatments that may be leading to ups or downs in symptoms.

I hope people aren't harmed by taking all this stuff.

It's exactly the same message as the BPS-crowd, but coming from someone that's trying out some supplements to see what sticks. Just as unethical coming from her as it is from them.