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

Discussion in 'ME/CFS research news' started by Dolphin, Oct 21, 2017.

  1. Amy Proal

    Amy Proal Established Member

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    Thanks Hip!

    Most of what you say about the treatment and the science behind it here is accurate, and I really appreciate you taking the time to explain this calmly! But yes to clarify: we absolutely think that persistent viruses can play a role in ME/CFS, and in fact, viruses are some of the main pathogens that deregulate VDR receptor activity:)
     
    Dmitry, Hip and ScottTriGuy like this.
  2. Amy Proal

    Amy Proal Established Member

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    Also Dannybex: do you really think an article written by Dr. Mercola is the best way to educate people about my work? Dr. Mercola had a personal problem with our research from day #1 because he is funded by vitamin D supplement companies and the indoor tanning industry. And since we argue against high-dose vitamin D supplementation, he simply tried to trash our work for financial reasons. Interestingly, he has since been sued big-time for such conflicts of interest:

    https://www.chicagotribune.com/business/ct-sunbed-doc-settles-0415-biz-20160414-story.html
     
    Sarah94, Dmitry and ScottTriGuy like this.
  3. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    Wasn't Penny a moderator for Dr Marshall's forum? Or was she also involved with CFSExperimental? When I was a member of the later group I believe it was Ken Lassesen who was the administrator.
     
  4. Mij

    Mij Senior Member (Voting Rights)

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    You are correct about Ken Lassen. I'm not sure if Penny was a moderator for Marshall's forum.
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I am sorry that you feel aggrieved, Amy. However, the words above indicate clearly that you do not understand the basic requirements of valid biomedical science. None of the treatments you mention are of any value to anyone as far as we know from the evidence.

    This forum was set up to take a critical scientific view. That can seem harsh at times but it is the only way to get at the truth. It isn't a narrow view. Anything can be considered, but the evidence needs to be valid.

    I am an immunologist and I have never heard of 'Immunologic Research'. Most recently set up journals are rubbish I am afraid and even the old once-respected ones include nonsense these days. There is no such thing as a reliable journal now.
     
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  6. JES

    JES Senior Member (Voting Rights)

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    Immunologic Research from quick Googling has been around for 35 years, though it has apparently changed its name a few times. The impact factor is 2.5, which ranks it among the better 30% of journals.

    I fully agree with everything regarding a critical scientific and evidence-based view. However, I don't fully agree that no treatments are of any value for ME/CFS patients. I would bet that almost every ME/CFS patient on this forum takes a drug or supplement that he or she finds of some benefit. Regarding LDN, even in this forum, which is set to take a critical view as you put it, several members in this thread report benefit. There is a value to these type of off-label treatments, at the very least for treating disease related symptoms.
     
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Maybe it has changed its name but I must have read several thousand immunology papers over the years and never come across it.

    I doubt it is as many as you think. A lot of people on the forum are well aware that nothing has any useful effect on ME as far as we know. Lots of us are attached to things because we think they might help but the reality is they probably don't.
     
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  8. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

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    I don’t, I’ve tried lots and nothing has worked. I like to see if there’s any evidence for something working before trying it these days.
     
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  9. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    Location:
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    I don't.
     
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  10. TiredSam

    TiredSam Committee Member

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    Not me. Tried a few briefly, but I'd rather not fiddle around with things which could also lead to a deterioration.
     
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  11. JES

    JES Senior Member (Voting Rights)

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    I'm just skeptical that there will be "the drug" that will cure or improve a significant part of the patients with ME/CFS, at least not during my lifetime. Individualized medicine, by looking at factors like the microbiome and deciding the best course of action, may be the only way to obtain improvement for many people.

    I looked at the history of drug development for depression, which appears to be a heterogeneous condition with many different causes, in that sense similar to ME/CFS (and by this I'm not at all implying that ME/CFS is a psychiatric illness, just that it appears to share the character of heterogeneity). When the first tricyclic antidepressants were developed and tested on a selected small group of hospitalized patients with severe depression, the response rates were high, as much as 60-70%. But once the scope of patients treated with antidepressants grew wider, the effect over placebo kept reducing, to where it's only slightly above placebo now. The current situation is that one antidepressant might help one patient whereas another patient might be helped by another and a third patient responds to none. What's worse, nobody seems to know why these differences occur, so there is no way to predict what antidepressant person X would respond to, if any. And this is after 50+ years of drug development and millions of dollars invested.

    This similar problem in ME/CFS I think showed up in the Rituximab trial. There were people that reported significant, even huge benefit, in the smaller phase 2 group. I remember in particular this table which I captured two years ago. After looking at aforementioned table, I was very confident this would be the long awaited effective treatment for ME/CFS, as were most people I discussed with. But when the patient group was widened for the phase 3 trial, the effect was suddenly no longer significant.
     
  12. lansbergen

    lansbergen Senior Member (Voting Rights)

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    I was not. I said it is not for me.

    The med I still use has many effects on T cells and no known direct effect on B cells.
     
  13. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

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    I’m just skeptical that any of these treatments have been discovered yet and I’m done experimenting on myself until there’s some evidence to back up anecdotal reports.

    Edited for duplicated word
     
    Last edited: Mar 8, 2019
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  14. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    Nope! Not a one. I have not found a single drug or supplement that has helped in any way regarding my ME/CFS.
     
  15. Hip

    Hip Senior Member (Voting Rights)

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    How many drugs and supplements out of the following fairly standard list of medications known to help ME/CFS have you tried? Many of these are employed by leading ME/CFS doctors.

    B12 methylcobalamin injections
    Low-dose naltrexone
    Oxymatrine (for enterovirus ME/CFS)
    Valcyte (for herpesvirus ME/CFS)
    Nimodipine
    GcMAF injections
    Tenofovir

    Piracetam (for brain fog)
    Methylphenidate (for brain fog and fatigue)
    Dichloroacetate (for brain fog, fatigue and pain)
    Modafinil (for brain fog)
    Moclobemide (for brain fog)

    D-ribose (to speed up PEM recovery)
     
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  16. Mij

    Mij Senior Member (Voting Rights)

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    Two treatments have helped me, omega 3 and magnesium/taurine injections.
     
  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    None of those are known to help ME/CFS as far as I know.
    'Leading ME/CFS doctors' does not necessarily equate to doctors who know what they are doing. I can think of some leading politicians...
     
  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The problem is that individualised medicine can only kick in after you have a result on a whole population - a standard controlled trial. Once you know there are some people who truly benefit you can start finding out how to 'individualise' them. But you can never get reliable evidence of effectiveness from individuals without these population trials. In theory there are some situations where you can but they are very much the exception.

    Individualised medicine is always a refinement after the standard boring task of proper controlled trials. In any other guise it is a mirage.
     
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  19. Hip

    Hip Senior Member (Voting Rights)

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    I agree that if you are talking about phase III clinical trials, sure, we don't have that kind of evidence for these treatments.

    And the benefits these treatments provide are often not dramatic, so they don't attract a great deal of interest in terms of large clinical studies. But some on the list have been shown effective in small-scale studies.

    Generally, from anecdotal accounts I've read on the forums, you'd be very lucky if any of these treatments will move you up even just 1 level on the ME/CFS scale of very severe, severe, moderate, mild, remission. Such a 1-level improvement is quite rare.

    But if such an improvement does happen to you, even a 1-level improvement is still welcome, as there is quite a difference between say severe ME/CFS and moderate ME/CFS.



    Having ME/CFS is a bit like being locked up in a prisoner of war camp. Every officer so incarcerated dreams of freedom, and in the movies at least, spends much of his time hatching escape plans with his fellow POWs.

    Even though the chances of escape are small, it's the very planning of an escape that raises morale among the imprisoned officers. This analogy perhaps explains the psychology of why many ME/CFS patients like to discuss potential treatments that they hope might lead to health improvements.

    Yes the chances of hitting upon an ME/CFS treatment that provides substantial improvements are small, but they are not zero. And even if none of the treatments you try over the years help, some people find the morale-raising effect of pursing treatments is in itself a treatment of sorts.

    I know in my case, every time I start thinking about trying out a new treatment, it puts me in a more optimistic state — probably unfounded optimism, probably foolish optimism — but optimism nevertheless. And in addition, there is still that small chance I might get lucky. In fact I did get lucky with one treatment I tried, which moved me up perhaps ½ a level on the scale.
     
    Last edited: Mar 8, 2019
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  20. JES

    JES Senior Member (Voting Rights)

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    Yes, and I agree with above that you are unlikely to get significant improvement in ME/CFS from any currently available treatment. My point was more that there are treatments that help with symptoms and those should be offered to ME/CFS patients. I have found plenty of supplements and medications that have helped with sleep, brain fog, neuropathic pain, wired but tired feeling, etc. Unfortunately they do not magically turn the core disease around. I also have had significant reduction in a few bothersome symptoms from simple dietary changes, which are very low-risk to try out.

    And there is definitely the morale-raising effect of trying something new, I agree. People also fill lottery tickets although they know they have almost zero chance of winning, the chance is even less than recovering from ME/CFS.
     
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