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Rich Carson's advert/hype of a new drug treatment for ME.

Discussion in 'Latest ME/CFS Research' started by AndyPR, Mar 9, 2017.

  1. AndyPR

    AndyPR Senior Member

    From a Facebook post by Rich Carson (of ProHealth)
    Original post here https://www.facebook.com/rich.carson.94/posts/721539264685295

    This just seems a bit of an odd way of doing things like this to my mind. Don't drug companies normally want to keep their research under wraps to stop competitors from trying to copy them? Then there's the picture which totally oversells what is actually described. Or perhaps I'm just being over sensitive about it, obviously if it was an effective treatment then that would be awesome, but so far they've only tested it on rats (information from a comment on the Facebook post).
     
  2. Denise

    Denise Senior Member

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    I don't think you are being overly sensitive and I too wonder about the publicity. From the little said about the work on this drug, it seems premature to be hyping it.
    Like many others, I've spent many years waiting and hoping something useful will become available for patients. During these years I have learned not to get my hopes up. That's not to say I am no longer hopeful, I am hopeful. But it is tempered with some realism about the drug development and approval process as well as realism about what is and is not known about ME (let alone GWD, FM, Lyme's, MCS, etc.).
    But I fear the hopes of others may be raised and dashed with things like this.
     
  3. A.B.

    A.B. Senior Member

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    I don't think you're being overly sensitive about it. The only purpose of this news appears to be that of generating hype without providing any real information.
     
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  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Pure scam. Leading researchers and clinicians have never heard of this and are unlikely to want to. The guy cannot even write good English. It annoys me that we live in a world where it is acceptable for people wanting to make money out of other people who are sick are allowed to do pretty much say they like.
     
  5. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Lets say hypothetically from the hype machine flyer, it's an anti gliosis/anti inflammatory drug that does what it claims or appears to claim - lowering sympathetic arousal, thus increasing tolerance to stressors.

    Fine. But then we have to be sensible and ask is it really a new drug for ME or Chronic Fatigue states or people plagued with this specific issue (hyper arousal of brain neurons). To me I'd say the later. Note they then claim it would also work for other related conditions, known to also have this 'wired' problem. I'd add Autism into that list too.

    So even if that works, it won't reverse autoimmunity, chronic intracellular infections, won't cure POTS and other forms of Dysautonoma in ME CFS which alone make patients terribly ill. ontop of having their original diagnosis of ME and CFS.

    The list is enless what it won't fix.

    So for arguments sake, lets say it can 'cure' one important mechanism.
    Great, so a subset of people who are told they have ME CFS, could feel significantly better - but do these people represent all forms of CFS and ME or a subset?

    It seems rather unlikely any drug 'works' for CFS before we know which sub-groups exist in ME and CFS!

    Personally, I think it's irresponsible for anyone to actively promote a treatment in a heterogenous group of patients because so many people will be bitterly disappointed when it doesn't even get FDA approved, never mind work for them, and that includes me. Even if it was FDA approved, is it for ME and CFS, or does the small print say 'hyper arousal state' - found in ME CFS etc. If so, it's just treating one issue in the disease, not the disease itself.

    I'll stop complaining but I think younger people who read such material will be believing they can be treated, only to find out how researchers using a certain drug define ME CFS, is critical to the outcome for any proposed treatment. That will also apply to Rituximab, Antiretrovirals or guided prayer sessions.

    We need biomarkers, before we can be sure we are treating subsets of patients. As is stands, no researcher knows who is who, as we have no biomarkers when testing therapies on patients.
     
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  6. AndyPR

    AndyPR Senior Member

    A little bit more information from comments on that post;
    but no information on where and exactly when. Just seems very weird to me.
     
  7. A.B.

    A.B. Senior Member

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    I can't imagine a pharmaceutical company (start up or not) would allow the news to be spread like this.
     
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  8. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Thanks for updating us. It's put my mind at rest it's nothing of real ground breaking importance other than, perhaps, to the people who want to maximize investor interest, before floating the company on the stock market - Rich carson says in a Facebook post the company is ''not publically traded at this time.''.
    Source: https://www.facebook.com/rich.carson.94/posts/721539264685295
    To me, this implies it will be in the future.

    Even if it was of huge importance, it's potential availability is at least 3 years away according to the Facebook post discussions above. In 3 years we'll have the Rituximab findings out, and at least Phase 1 of the CycloME study for severe ME from Norway. Also by then, the Stanford group should have made real progress.

    Found this about the gentleman apparently presenting with Dr Charles Lapp, Dr Podell.

    Source: http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=29814

    There are three youtube videos on the link above of Dr Podell talking with Dr Light about Chronic Fatigue and Pain.
     
    Last edited: Mar 9, 2017
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  9. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Unless they need to maximise speculators (potential investors) who will potentially invest millions of dollars into the company after a press release on Friday?

    ''Dr. Jarred Younger joins with Drs. Charles Lapp and Rich Poddell for a presentation on the drug this Friday.
     
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  10. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    It appears to be an adrenergic receptor blocking drug.
    If you block it, the sympathetic tone reduces.

    If this reduces you would be less 'stressed' at a CNS level.
    Without doubt you would have less pain, if the the pain was CNS innervated.

    How this treats ME CFS I don't know? I guess it treats it if you define ME CFS largely as comprising of Chronic Fatigue and Pain.
     
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  11. Undisclosed

    Undisclosed

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    N = 12 - 20 in a clinical trial means absolutely nothing statistically. One would think a "700 mill company" would pony up enough cash to make the results significant.
    Let's just fly a freaking red flag now because their is no way that one treatment can treat these very different illnesses. This is a hallmark of quackery -- claiming one treatment can treat multiple illnesses.
    Did they provide any kind of scientific evidence for this existing in ME/CFS, Fibromyalgia, GWS, MCS, and chronic lyme disease. What stress related brain receptor sites? How do they test for these sites in individual patients. Is there any support for the rest of the statements.

    What leading ME researchers and clinicians? Cort Johnson advertises for ProHealth on Health Rising so of course he is going to support this by an article because he will earn money from it. This just seems to be an over inflated article that has absolutely no support.

    When they produce a study with thousands of patients then I might be less sceptical.

    I am also assuming ProHealth will be selling the final product.
     
  12. Gijs

    Gijs Senior Member

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    No scientific publications? No news.
     
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  13. A.B.

    A.B. Senior Member

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    Is it even allowed to sell an injectable drug without proving that it actually does something useful?

    The business model here might be to sell this to patients while avoiding FDA regulations somehow (thus the hyping targeting patients).
     
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  14. hixxy

    hixxy Senior Member

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    Without more information it's hard to be sure but it seems likely they are coming at ME/CFS from the same direction as NCNED. Their hypothesis is influenced by an immunologist they collaborate with who treats a lot of MCS and MCAS patients and he understands and treats these diseases as TRP channelopathies.

    This statement does seem awfully unprofessional though. Really do wish they'd hold off until they can provide a full details.
     
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  15. hixxy

    hixxy Senior Member

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    You can't possibly know any of this with how limited the information is in the statement.
     
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  16. hixxy

    hixxy Senior Member

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    What secret information do you have that we don't?
     
  17. *GG*

    *GG* senior member

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    What is the alternative?

    GG
     
  18. alex3619

    alex3619 Senior Member

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    This looks to me like two things. First, its a pilot study. Its not designed to produce hugely significant results, its about evidence there is something there worth spending more money on. Pharma can spend over a billion dollars on a new drug. They want signposts along the way to demonstrate that its worth pursuing.

    Second, it appears to have a marketing slant. What they are testing here, and why, is unknown. They might indeed be looking to increase investor interest, or are thinking about crowd funding, or just looking for community interest in the idea.

    If this idea about marketing is right then you can be sure that the information presented on Friday will be made public very quickly.

    I find the comment about a new peptide treatment, without being specific, consistent with pharma involvement. They cannot hide a clinical trial, but want to be vague until they put out a formal call for trial participants.

    We need more information.
     
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  19. alex3619

    alex3619 Senior Member

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    An injectable experimental peptide? I really doubt it. This has FDA implications.
     
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  20. duncan

    duncan Senior Member

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    If you accept the concept of chronic Lyme disease at face value as an unresolved bacterial infection, then in what way can this therapy eliminate that infection? I notice they don't say it holds any value in early, early disseminated or late stage Lyme disease.

    Almost seems they are casting as wide a marketing net as they can...
     
    Last edited: Mar 9, 2017
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