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

Mfairma said:
It’s also, to me, quite toxic. It makes it so much harder to be sick with a horribly debilitating, untreatable illness when you constantly have people milling about telling you it is treatable and you can get your life back if you only do A, B, and C, and then maybe D, E, and F. Particularly because the people that do this systematically undervalue or dismiss the costs and harms of the treatments they propose, in ways you don’t necessarily see interacting with them casually.
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I thought this was an interesting point. It's one thing to have a horrible disease. It's worse to have a horrible disease with no effective treatment. It's even worse to have a horrible disease with no effective treatment and lots of people telling you that if only you did this, or that, or spent money on something else, you would be cured.

The result of the last scenario is that it's harder to get on with accepting and adapting to your situation, and focussing on things like constructive advocacy that might actually change things. Perhaps everyone with a disease with no treatment has a constant nagging feeling that they should be doing more to get well, but for diseases like ME/CFS where even the doctors make unhelpful suggestions and think people aren't trying hard enough, I think that feeling is hugely amplified.
 
Hubris said:
I mean, for every ME patient that goes into remission from those antibiotics (I tried all of those in the protocol and more, 0 benefit) there's a hundred that don't. We've been trying this stuff for 30 years.

It's a lottery ticket that's probably worth trying if you are desperate enough (taking those antibiotics for a few days is probably not a big deal, let's be honest) but their presumption of knowing how the illness works is not justified. If our theories were correct way more patients would be responding. I see they are trying to replicate this but are they even doing the proper controls, blinding, objective measures etc or is it just another useless study?
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I am one of the lucky ones with a pretty good lottery ticket.

I do not experience the severe ME type symptoms that I did for 25 plus years through multiple, ongoing antimicrobial treatment. I am one of the lucky ones that this approach worked.

Underlying infections and immune deficiencies mean I need to stay on antimicrobials to remain well.

This approach did not resolve my daily migraines which got worse over time. Monoclonal antibody is now, fingers crossed, working here.

I have shared my experience and supported many to explore whether same or similar might help them. Some it works for, others not a jot.

Until patients can be stratified based on science and research patients are flying blind. And it takes a lot if resources, effort, time and scientific reading and social support to attempt treatments. I share to support others who are exploring. But it's important that patients understand what they are undertaking and that they don't jump on a bandwagon by being mislead by overly optimistic, poor quality information.

Ultimately, I think that it is unlikely that the type of treatment approach that got me well will ever be researched or studied in clinical and research. Too complex. Too long to recover and too expensive. However, whatever combination of factors that made me severely affected by ME type symptoms - can be elucidated then newer, faster, more reliable treatments can hopefully be developed. Along with the subgroup stratification so that the patients can have treatments tested in RCTs. Patient experimenters have a lot of knowledge to share but it must be done responsibly and with care.
 
Joan Crawford said:
I do not experience the severe ME type symptoms that I did for 25 plus years through multiple, ongoing antimicrobial treatment. I am one of the lucky ones that this approach worked.
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If you have an underlying immune deficiency with chronic or recurrent bacterial infections, and you also have ME, it's likely that treating that would make you feel less fatigued. But you are not treating ME, you are treating a separate process that just so happened to make your ME symptoms worse.

I think some patients have separate issues making their fatigue worse and make the assumption they are treating ME when they deal with those and feel better.

I have many food intolerances that make some of my ME symptoms a lot worse. I avoid those foods, but I wouldn't say that a strict diet is a treatment for ME, it clearly isn't.
 
Hutan said:
Perhaps everyone with a disease with no treatment has a constant nagging feeling that they should be doing more to get well, but for diseases like ME/CFS where even the doctors make unhelpful suggestions and think people aren't trying hard enough, I think that feeling is hugely amplified.
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I imagine it’s probably a factor in most debilitating illnesses, even those with treatments. But I do agree it seems like it’s worse in this disease, or at least similar poorly understood post-infectious diseases, where there’s stigma, no treatments, and ambiguity about what the disease is and who has it.

One encounter that has stuck with me was running into my wife’s co-worker at Best Buy. She had recovered from CFS following a Candida diet and was very aggressive in telling me I needed to go on this diet and was neglecting my health by not doing so. (Never mind that I had already tried it extensively).

That kind of attitude and certainty is easier to tolerate from outsiders, but, for me at least, it’s much more corrosive when it comes from patients or experts. Some spaces are better in this regard than others, S4ME for example, but I can never totally steel myself against the apparent popular view that not pursuing treatments is either naive or some kind of personal failing.
 
Mfairma said:
That kind of attitude and certainty is easier to tolerate from outsiders, but, for me at least, it’s much more corrosive when it comes from patients or experts. Some spaces are better in this regard than others, S4ME for example, but I can never totally steel myself against the apparent popular view that not pursuing treatments is either naive or some kind of personal failing.
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yes its dreadful, and why i only really access S4 for ME related conversation, everywhere else seems to suffer from at least some of this problem. Even MEA fb. At least its safe here on S4.
 
Lidia Thompson said:
I have noticed that the Guardian article has been amended since the original posting.
The following chages were made:
1. Syndrome has been included in the title
2. Between 2007 and 2016, only £10m of UK government funding was doled out for the study of ME/CFS
3. Added: ME was recognised as a neurological disease by the World Health Organization in 1969
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The Graun is very responsive when there is a good case for amending an article.
 
NelliePledge said:
Maybe nowadays, they published some of the worst articles in the past - militant patients
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Okay, how about “responsive when there is a clear and uncontroversial case for minor amends to an article”. Every writer and editor is defensive when the main thrust of a piece attracts complaints.

I was thinking, though, that someone should get in touch with whoever curates their style guide (it’s published online for everyone to use) and get something added about chronic fatigue not being an elegant variation of ME/CFS. Someone at one of the associations, or someone who tweets.
 
Hutan said:
I thought this was an interesting point. It's one thing to have a horrible disease. It's worse to have a horrible disease with no effective treatment. It's even worse to have a horrible disease with no effective treatment and lots of people telling you that if only you did this, or that, or spent money on something else, you would be cured.

The result of the last scenario is that it's harder to get on with accepting and adapting to your situation, and focussing on things like constructive advocacy that might actually change things. Perhaps everyone with a disease with no treatment has a constant nagging feeling that they should be doing more to get well, but for diseases like ME/CFS where even the doctors make unhelpful suggestions and think people aren't trying hard enough, I think that feeling is hugely amplified.
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When I was still making bank(living at home and earning about 700 euro's p/m gheghe) I would've loved to have the knowledge I know have. It would've all gone straight to Solve or some organization like that. That might be a regret, if you could call it such. One of the things that bum me out at the moment is that it's very hard to start any sort of fund-drive or whatever when you're struggling to just get through the day and are pretty much invisible to the outside world.
 
It seems from that small thread on Twitter that the only clinicians involved are the patients' own doctor who they will badger into following the so called protocol, prescribing the drugs and doing any follow up, so no consistency or overall ethics approval. I can't see any NHS doctor being allowed to do this as there are tight restrictions on prescription of antibiotics and other drugs outside a clinical trial. I think they could get into serious hot water if someone reacts badly to the drugs.

The two people running this are and engineer and an ecologist. That seems wholly inappropriate and unethical for people encouraging others to experiment with powerful drugs.
 
Andy said:
Frustrating that when the article is talking about UK ME/CFS research that DecodeME isn't mentioned (although I may be slightly biased there) and surprising that they don't talk about Invest in ME's efforts that are looking at the gut microbiome.
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In my view, it is probably best that DecodeME, which is a rigorous scientific study, is not mentioned in an article on a pseudoscientific approach to treating ME/CFS so as to not run the risk of putting them on an equal footing. IIME’s research could have been mentioned given the topic, though perhaps the journalist is not aware of Prof Carding’s work.
 
This is what they say as an introduction to their online application form for participants:
https://docs.google.com/forms/d/e/1FAIpQLSewtEub3_hQe1DhgxzJAaNMQZSTq_dSU9A14p2fySCWYh0JEQ/viewform
Quote:

RemissionBiome Self-Experiment Application
The next phase of RemissionBiome will include 50 people completing the protocol as a self-experiment, supervised by their healthcare providers.

Please fill out this application if you would like to be part of this community-science experiment. A few points about the form:
  1. You can save your progress and come back to it if you log in with Google.
  2. It should take 3-5 minutes.
  3. There's not a character limit for the "other" choices, so feel free to add as much info as you think is relevant, but it's also ok to keep the answers to just a few words.
  4. The cost of the protocol is $3000 USD /participant, but we are fundraising to supplement what people can pay, so don't let finances hold you back from applying.
  5. None of the answers to these questions are deal-breakers. They will just let us prioritize and plan for when people should start and how much prep they need to do. There will be many more opportunities after this first 50, so please apply and get in our database, even if you think you would take longer to be ready to do the protocol.
  6. If you have questions, please email RemissionBiome@gmail.com.

Follow us at RemissionBiome.org, on YouTube, and on Twitter: @RemissionBiome @RenegadeRes @chydorina @tessfalor @isabelramirezrd @RemissionBiomeVids

Contribute to the GoFundMe.

Thank you for your interest! We couldn't do this without the community support.
 
Have they even published any results from their n=2 study? That was reportedly started in February and by the original plan should be well and truly over by now. Of course, in the intervening time, they have extensively modified the protocol and otherwise discussed publicly at least half a dozen additional drugs and supplements. Methylene biue? Nicotine? Peptides?

Trish said:
I can't see any NHS doctor being allowed to do this as there are tight restrictions on prescription of antibiotics and other drugs outside a clinical trial. I think they could get into serious hot water if someone reacts badly to the drugs.
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I cannot see it happening in Australia for similar reasons. Maybe the shady ones that skirt regulation on a regular basis.

Trish said:
The two people running this are and engineer and an ecologist. That seems wholly inappropriate and unethical for people encouraging others to experiment with powerful drugs.
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Not only this, the video that accompanied this recruitment drive says

@chydorina said:
you're gonna get trained by Tess and I [...] to become trainers and help other people do RemissionBiome in future
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Alarming that unqualified people will be training even less qualified people on a medical protocol.
 
The parallels with the Lightning Process are increasing - non clinicians promoting and running experiments on vulnerable people that can lead to harm, claims on the basis of very short term improvement in a tiny sample, setting up training programs, getting medics who should know better to publicly support their experiments, getting the media behind them, asking for lots of money, ...

Edit to add: Also calling it by a different name in order to try to circumvent medical ethical oversight (LP is 'training' not treatment, this is called Self experiment rather than clinical trial), And using an emotive name - Lightning Process, Remission Biome...
 
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Transcript of tweets:
Dr.T, PhD I @remissionbiome@chydorina
The@remissionbiome
n=50 self-experiment is open for application for #mecfs #LongCovid. This experience will be a data lovers dream. 3-6-12 months of all the prep, the acute phase, and the recovery phase with your fellow community-science self-experimenters. Please apply!

RemissionBiome MECFS/LongCovid Self-Experiment
@remissionbiome
The next phase of @RemissionBiome will include 50 people completing the protocol as a self-experiment, supervised by their healthcare providers. Apply to become one of those 50! All questions visible at once: https://forms.gle/D4ezdAmnwoebQd4B8… Split by sections: https://forms.gle/Kcv9R22Nsmw2vBZm7

Trish
Hi
@remissionbiome
you describe yourself as a medical researcher. May I politely ask you to remove that or state your qualifications. Can you link to the evidence publication on which you base your project, and the ethics approval you have for experimenting on humans?

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Transcript of tweets

Dr.T, PhD I @remissionbiome
The
@remissionbiome
n=50 self-experiment is open for application for #mecfs #LongCovid. This experience will be a data lovers dream. 3-6-12 months of all the prep, the acute phase, and the recovery phase with your fellow community-science self-experimenters. Please apply!

Dr Nicola Clague-Baker @ClagueNjc36
So interesting. Wish my friend could take part but she would need help as her cognition is poor and she lives on her own far from me. What is the inclusion criteria please?

Dr.T, PhD I @remissionbiome @chydorina
Beyond having #MECFS #LongCovid the major criteria for this first cohort is that they are capable of doing the sample collection and data collection and reporting. So someone who is severe could definitely take part but they would likely need help from someone.

Trish@ozfish
Hi Nicola, I am concerned at someone from Physios for ME promoting this. It has all sorts of red flags an no way would I encourage a very sick person to take part. See this thread:
[link added to this S4ME thread]
 
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