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

Discussion in 'ME/CFS research news' started by Wyva, Jul 9, 2023.

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  1. Trish

    Trish Moderator Staff Member

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    55,291
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    UK
    I don't understand how anyone will be able to get antibiotics to participate in this 'research'. In the UK NHS you have to get antibiotics prescribed by a doctor, dentist or in some cases pharmacist, and have a current infection that they are convinced is bacterial to get antibiotics. You can't just say I'm taking part in a patient run experiment and please can I have some amoxiclav.
     
    Trish, Jul 30, 2023
    #61
    Peter Trewhitt, EndME, Ash and 11 others like this.
  2. JemPD

    JemPD Senior Member (Voting Rights)

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    4,500
    :laugh: i mean, can you imagine!:D

    although since you would be likely to be referred for consideration for serious psych assessment as a danger to yourself, its not really very funny, but it made me laugh at the thought... is this possible in other countries? not that i think it should be, just asking
     
    JemPD, Jul 30, 2023
    #62
    Peter Trewhitt, Ash, RedFox and 6 others like this.
  3. oldtimer

    oldtimer Senior Member (Voting Rights)

    Messages:
    725
    Location:
    Melbourne, Australia
    No GP I've had anything to do with would prescribe antibiotics like this in Australia. My dentist used to prescribe them after major dental work to prevent possible infection (once recommended after certain previous surgeries) but no longer. And despite the constant rumours, livestock are not routinely fed antibiotics, in fact they are a schedule 4 medicine in NSW at least. I believe in many countries a vet isn't even required to get hold of them.
    Antibiotic resistance should be taken more seriously than in this so-called research.. I'm shocked.
     
    oldtimer, Jul 30, 2023
    #63
    Peter Trewhitt, Ash, NelliePledge and 10 others like this.
  4. JES

    JES Senior Member (Voting Rights)

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    209
    I completed the survey. I noticed some improvement in symptoms like brain fog, motivation and mental energy with nicotine. We'll see if that's just the stimulant effect or if it will last. Nicotine does bind to nicotinic acetylcholine receptors, which could help with cholinergic stimulation and thus ANS dysfunction for example.

    The bigger issue is that no matter how well the survey is formulated, it will still be impacted by placebo, just like all the other surveys like "have you improved from vitamin B1?" etc. Most of these end up with a somewhat positive result.
     
    JES, Aug 2, 2023
    #64
    Peter Trewhitt, bobbler, Ash and 4 others like this.
  5. RedFox

    RedFox Senior Member (Voting Rights)

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    1,286
    Location:
    Pennsylvania
    People can buy from sketchy online pharmacies or obtain antibiotics for animals.
     
    RedFox, Aug 2, 2023
    #65
    Peter Trewhitt, EndME, Ariel and 4 others like this.
  6. Hutan

    Hutan Moderator Staff Member

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    29,221
    Location:
    Aotearoa New Zealand
    Doxycycline is used for malaria prophylaxis e.g. this is from the CDC:
    So prospective travellers can probably get it prescribed in most countries. Not that I'm recommending it. The CDC says pregnant women shouldn't take it. If anyone has tablets and decides to take them, be careful to take them when you are upright, and with liquid, as they can get stuck in the oesophagus and cause excruciating pain. I managed to do that once while on a plane. Trying to sit quietly and not look weird while you feel like a hole is being burned in your oesophagus and tears are streaming out of your eyes. It hurt to swallow for a couple of weeks.... Capsules, with water are much safer.

    I have a slight suspicion that the courses of doxycycline that I and my children took for malaria prophylaxis over the years disrupted our guts, and maybe even set us up for ME/CFS.

    After I and my two children became ill, I thought we might have ehrlichia or anaplasmosis because our dogs had had that (from ticks). They (the dogs) were efficiently diagnosed at the vet in SE Asia by the doctor looking at samples of their blood under a microscope during the visit, and given doxycycline. Our doctor in Melbourne had never heard of ehrlichia/anaplasmosis, of course, and testing for it was impossible. But I convinced the doctor to prescribe us doxycycline courses. We followed that with a fancy prebiotic. It obviously didn't fix us.

    So, I really do understand the desire to try something, but I doubt that Remission's protocol is going to do the job.
     
    Last edited: Aug 2, 2023
    Hutan, Aug 2, 2023
    #66
    Peter Trewhitt, alktipping, Mariaba and 6 others like this.
  7. Revel

    Revel Senior Member (Voting Rights)

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    Reading Twitter comments, glad I wasn't the only one somewhat disturbed by this latest Remission Biome image:

    Remission Biome.jpg
     
    Revel, Sep 4, 2023
    #67
    Peter Trewhitt, EndME, Ariel and 7 others like this.
  8. Trish

    Trish Moderator Staff Member

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    I just went to have a look at the Remission biome tweets, and found I'm blocked!
    The only things I remember posting in response to their early tweets was a suggestion that they need to check if they or any doctors involved need ethics approval for their research.

    Put that with the above image, and I'm lost for words.
     
    Trish, Sep 4, 2023
    #68
    Peter Trewhitt, Mfairma, EndME and 11 others like this.
  9. Revel

    Revel Senior Member (Voting Rights)

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    The image is meant to represent "science and hope". Art being so subjective, this wasn't my initial reaction on first viewing, but each to their own:
    Remission Biome 2.jpg
     
    Last edited: Sep 4, 2023
    Revel, Sep 4, 2023
    #69
    Peter Trewhitt, Trish, EndME and 4 others like this.
  10. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    North-West England
    I am also now blocked—by their main page and one of the RB team—since our discussion here a few weeks ago.
     
    InitialConditions, Sep 4, 2023
    #70
    Peter Trewhitt, Hutan, EndME and 7 others like this.
  11. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    6,400
    Location:
    UK
    If I saw the picture of the woman with the halo in any treatment I was investigating it would alert me to the fact that I might be getting involved in a religious cult and it would go straight on to the reject pile. It appears the woman doesn't see why her picture is disturbing and she also appears to think she is some kind of angel or god. Yuck. It makes my skin crawl.
     
    Last edited by a moderator: Sep 4, 2023
    Arnie Pye, Sep 4, 2023
    #71
    Peter Trewhitt, RedFox, EndME and 2 others like this.
  12. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    https://twitter.com/user/status/1698414846688276683



    ONE sick billionaire.

    @remissionbiome is currently trying to raise 1.5M through corporate/venture philanthropy or personal donation to figure out why antibiotic-mediated remission events happen.

    We would have the answer in 5 months.
    We almost ALL get baseline increases.


    Sure… they will have ALL the answers in 5 months.
     
    Jaybee00, Sep 4, 2023
    #72
    Peter Trewhitt, Mfairma, EndME and 1 other person like this.
  13. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Jaybee00, Sep 4, 2023
    #73
    Peter Trewhitt, RedFox, EndME and 3 others like this.
  14. jonathan_h

    jonathan_h Established Member (Voting Rights)

    Messages:
    57
    The view I’ve come to over the years regarding ME research and treatment anecdotes, not through any special Truth Knowing process but just me muddling through best I know how with the biases and ignorance that entails, is that there’s a lot of noise out there (things which, when we finally understand ME, will turn out to not be relevant), and little signal (things that will remain relevant). The view of the RemissionBiome founders seems to be that virtually everything—every preliminary finding or treatment anecdote—is signal, and I’m uncomfortable with their project for that reason.
     
    jonathan_h, Sep 4, 2023
    #74
    Peter Trewhitt, Tia, Mfairma and 28 others like this.
  15. Ash

    Ash Senior Member (Voting Rights)

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    Oh @jonathan_h thank you.
    I could never articulate that sense.

    I feel like a lurker of some infectious agent is likely. Microbial assistance is reasonable. But feel uncomfortable with this marketing approach.
     
    Ash, Sep 4, 2023
    #75
    Peter Trewhitt, Ariel, Hutan and 4 others like this.
  16. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Spot on.
     
    InitialConditions, Sep 4, 2023
    #76
    Peter Trewhitt, EndME, Ariel and 9 others like this.
  17. Andy

    Andy Committee Member

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    22,989
    Location:
    Hampshire, UK
    From "Dr. T",

    "If your GUT (enteric nervous system barrier) or BBB (blood-brain-barrier) is compromised you can make REALLY IMPACTFUL changes in as little as a few months. Heal leaky gut w/ BPC-157 and gut-brain axis with ProdromeGlia and ProdromeNeuro."

    No need to bother with expensive and lengthy research to establish efficacy and safety of anything, just take a random person's word for it on Twitter.....
     
    Andy, Sep 6, 2023
    #77
    Peter Trewhitt, Mfairma, Arnie Pye and 16 others like this.
  18. Ash

    Ash Senior Member (Voting Rights)

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    :arghh:
     
    Ash, Sep 6, 2023
    #78
    Peter Trewhitt, alktipping and Simbindi like this.
  19. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Jaybee00, Sep 6, 2023
    #79
    Peter Trewhitt, EndME and Ash like this.
  20. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    I'm tempted to find and post a video with the title "Am I bovvered" to be honest. ;)
     
    Arnie Pye, Sep 6, 2023
    #80
    Peter Trewhitt, alktipping, Sean and 1 other person like this.
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