1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.

Hypothesis piece by Amy Proal, a microbiologist with ME/CFS

Discussion in 'BioMedical ME/CFS News' started by Dolphin, Oct 21, 2017.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    186
    Likes Received:
    852
    (I haven't read this myself)


    http://microbeminded.com/2017/10/18/a-letter-to-the-mecfs-research-community-doctors-patients/
     
    TigerLilea, Webdog, Chezboo and 9 others like this.
  2. BurnA

    BurnA Senior Member (Voting Rights)

    Messages:
    114
    Likes Received:
    705
    I can understand why....its very long.
     
  3. Trish

    Trish Senior Member (Voting Rights)

    Messages:
    864
    Likes Received:
    6,829
    Location:
    UK
    I had a go at skim reading it. I think I understand the thesis to be that ME is the body's reaction to ongoing infection related to the microbiome, and dysbiosis. The inflammatory reaction being the body's response to this.

    Therefore treatments aimed at damping down the inflammatory response, including rituximab may improve symptoms for a while, but unless the underlying infection is addressed it will recur worse than before because the body has not been fighting the infection so it gets worse. I think the idea is that the infection has invaded cells and the nervous system, so is hard to treat.

    The recommended treatment path is to boost the body's immune reaction, not reduce it, so the body can better fight the infection, but with intracellular infection die off you get herx reaction and feel a lot worse while the debris is cleared.

    The microbiome forms complex interactions, so it's not just individual cell types that are the problem, but microfilms etc. forming complex communities that alter their gene expression, and ME may be the result of a combination of successive infections.

    Given that I skim read about 6 hours ago, I may have completely missed the point. I'm happy to amend or delete this comment if someone can do a better job.

    Edit to add: I recommend reading Jonathan Edwards critique a few posts on from this one before spending precious energy wading through this lengthy paper.
     
    Last edited: Oct 22, 2017
    Inara, Maria1, healthforall and 12 others like this.
  4. Andy

    Andy Administrator Staff Member

    Messages:
    981
    Likes Received:
    5,733
    Location:
    Hampshire, UK
    Yup, just glanced at it and gave up on it due to the article's length. She'd get a larger patient audience if she gave an executive summary, or just used Trish's post above. :)
     
    Inara, Maria1, TigerLilea and 5 others like this.
  5. Snowdrop

    Snowdrop Established Member (Voting Rights)

    Messages:
    78
    Likes Received:
    368
    And if you click on the top bar 'basic concepts' she has other material.

    Interesting because there has been some previous chatter on that other site about vitamin D and she has much to say about harm in supplementing quoting studies she says are high quality. I of course can't speak to the science but it might be worth another thread and comment.

    http://microbeminded.com/harm-from-vitamin-d-is-supported-by-high-quality-studies/
     
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    241
    Likes Received:
    2,541
    I fear I am going to be critical, but trying to be constructive for the forum.

    I have read through most of it. The trouble is that a lot of it is wrong. The microbiome is not an 'infection'. If bacteria get into tissues and cause problems this is associated with a 'acute phase response' with a rise in CRP and ESR. We have no evidence for this occurring in ME/CFS. We have no evidence for ME/CFS being an 'inflammatory disease'. Cytokine differences are inconsistent, minimal and not suggestive of inflammation. (TGF beta comes up most often and is anti-inflammatory.) Evidence for higher rates of infection in ME/CFS has been looked for hard and the results are negative. We have very strong evidence against chronic bacterial infection.

    I could go on but the reality is that this is a whole lot of popular misconceptions strung together. And what is most striking about it is how unoriginal the ideas are. Everyone is batting on about the same thing and people have been batting on about hidden infections like this for a century. What is new is the meme that colonic bacteria are somehow good for us. Yet there is no real evidence for this since people who have had their colon removed have no problems from lacking bacteria.

    I think we have a major problem with science now that anyone can write essays speculating about diseases and get them published. In the old days scientists tended to be rather poor at writing and hated actually having to write up research. Maybe it is good that more people know how to write good sentences, but if the content is a muddled rehash of other essays we run into trouble.

    I was giving a seminar on research angles for ME/CFS to a pharmaceutical company last week. It was good to find these people interested in exploring the illness. But one of the staff quoted two papers back at me as examples of avenues I had perhaps missed and they thought were of interest. One was written by a patient many of us are familiar with, who has written reviews on oxidative stress with researchers who are not taken seriously by the research community as a whole. It was rather similar to this in many ways. The other was a piece of research from a private lab in the UK that again the research community as a whole does not take seriously. I was quite shocked that an industrial scientist should quote material that so obviously seemed to be poorly grounded.

    But the terrible thing is that this seems to be becoming the norm. In my old department there is a lot of this phoney science going on - it is often what gets funded nowadays. The science community has allowed its currency to be eroded to the extent of being almost worthless. Which is maybe why we need forums where people are prepared to debate honestly the quality of the arguments.
     
    Inara, Graham, Helen and 27 others like this.
  7. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    759
    Likes Received:
    4,762
    Location:
    UK
    I think a lot of us would be interested in hearing more about that, to the extent that you're able to talk about it. New thread, maybe? :)
     
  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    241
    Likes Received:
    2,541
    I cannot divulge the identity of the company but it is a large Biotech company that has shown interest in MECFS as part of its Neurology programme. I am hoping that I may be able to nudge them to set up a collaboration with other groups in academia but it is up to them to decide. At least they seemed interested and quite well informed.
     
  9. BurnA

    BurnA Senior Member (Voting Rights)

    Messages:
    114
    Likes Received:
    705
    I don't think there is any need for the fear.

    I had a similar impression of this paper but my knowledge level in this area is very low, hence I didn't say anything.

    Its good to have this criticism.
     
  10. Trish

    Trish Senior Member (Voting Rights)

    Messages:
    864
    Likes Received:
    6,829
    Location:
    UK
    Thank you @Jonathan Edwards for this critique. I did rather suspect that it was simply a stringing together of supposition based on unproven hypotheses.

    Edit to add: Though there does seem to be some interesting research on the microbiome being done in many places.

    It would be interesting to read an outline of what you said in your talk...
     
    Inara, markiemark, Aimossy and 2 others like this.
  11. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    354
    Likes Received:
    1,731
    Indeed, i have had the about the same thought, and having read a bit into the peer review process its quite clear that we need to tighten things up because fake science is becoming more prevalent. PACE and autism from vaccines are good examples of bad science that got published but should not have been :emoji_face_palm:
     
  12. dannybex

    dannybex Established Member (Voting Rights)

    Messages:
    46
    Likes Received:
    261
    I posted in response to this on the 'other forum' about a week ago. You can find a longer version there, but the concise takeaway is that Amy Proal is associated with Trevor Marshall* and the Marshall Protocol, which involves strictly avoiding any and all sunlight, even bright cloudy days, and worse -- even brightly lit rooms. They had docs and patients wearing long sleeve shirts, coats, hats, etc., all to protect them from the Evil Vitamin D. That plus benicar -- a drug for hypertension, which they claim stimulates the immune system(!) -- and an antibiotic that they originally claimed only needed to be taken for a couple years...and then you were cured.

    That was circa 2004 or so. Then cut to 2009-2010 to find out Marshall & Co were still taking antibiotics, hence, still sick.

    I'm passionate about this because about a half dozen members of our local support group tried this back around 2005 or so, and two nearly died of kidney failure, as Marshall kept telling them it was only a 'herx', etc.. He even sued a bedridden patient in California for libel/slander, in a clever way so that she didn't know about it until the morning she had to show up for court. A truly evil man, and a RIDICULOUS, DANGEROUS protocol. I mean, if avoiding sunlight would help our immune system then Whitney Dafoe and the thousands of other patients would be feeling a lot better. And why a hypertension drug would help patients with neurally mediated hypotension is beyond me...

    A google search will turn up many patients with horror stories -- some even from patients who used to volunteer and defend him on his forums.

    *Note that he is the coauthor on nine out of ten of her 'papers' on her references page:

    http://microbeminded.com/my-research/
     
    Inara, healthforall, Sid and 15 others like this.
  13. Wolfiness

    Wolfiness Established Member

    Messages:
    6
    Likes Received:
    66
    @Jonathan Edwards Do you have any hunches as to the mechanism of M.E. or do you think it's impossible to know atm?
     
    healthforall likes this.
  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    241
    Likes Received:
    2,541
    I have hunches but not with any good evidence. I do not think that inflammation as such is involved. Some other sort of signalling has gone wrong. The idea of disordered adenosine receptor function does intrigue me, although I do not think there is actually any good evidence for this.
     
    healthforall, lycaena, Alvin and 5 others like this.
  15. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    354
    Likes Received:
    1,731
    I've been working on analyzing the pyruvate dehydrogenase Fluge and Mella paper, (without a medical degree and with severe neurological impairments) and i would agree, if something is causing signaling to go wrong or is somehow doing the signaling itself it would explain a lot. I do wonder if Dr Davis's findings with his nanoneedle will provide a clue, if its proven to be ME/CFS related and he can identify the molecule(s) causing it it may be a game changing discovery.
     
  16. Cheesus

    Cheesus Established Member

    Messages:
    21
    Likes Received:
    237

    What is your opinion of the inverse of that statement: that colonic bacteria can be bad for us? I'm not talking about obvious examples in gastrointestinal disorders, but in systemic diseases such as RA.
     
  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    241
    Likes Received:
    2,541
    I don't think we have any evidence for colonic bacteria being involved in RA or any non-GI disease much.
     
    Trish likes this.
  18. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Messages:
    149
    Likes Received:
    724
    Location:
    Metro Vancouver, BC
    Enough said. That guy is a nut.
     
    Inara and dannybex like this.
  19. Robert 1973

    Robert 1973 Established Member

    Messages:
    10
    Likes Received:
    94
    Does the Mark Davis/Montoya cytokines study not provide evidence of inflammation?
    (http://www.pnas.org/content/114/34/E7150.full?sid=4fca51a6-9278-402d-af47-48d7aedc67f1)

    Montoya is quoted as saying: “Now that the study has established that it’s inflammatory, we can look for those drugs that treat inflammation” (http://scopeblog.stanford.edu/2017/11/08/demystifying-chronic-fatigue-syndrome/?linkId=44501684)

    Apologies if your have written about this elsewhere but would be interested to hear your take on this study.

    Edited to tag @Jonathan Edwards
     
    Last edited: Nov 18, 2017
    Inara likes this.
  20. Rossy191276

    Rossy191276 Established Member

    Messages:
    8
    Likes Received:
    18
    Regarding adenosine receptors Jonathan Edwards have you seen this research by Melbourne Bioanalytics in Australia that found that ME patients diagnosed with Canadian Consensus Criteria were 21 times more likely than controls to have G Protein Couple Receptors gene mutations?

    https://www.melbournebioanalytics.o...mecfs-by-neil-mcgregor-written-transcription/
     
    Inara likes this.

Share This Page