Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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What are the commonly available immune modulators?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Gingergrrl, Nov 16, 2014.

  1. Gingergrrl

    Gingergrrl Senior Member

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    @Hip Wow, that was an absolutely amazingly thorough response and that info should be in the roadmap (if it is not already there!). I skimmed through it but am going to read it again later before I even try to formulate my questions for you (since you have tried most of the things on the list.)
     
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  2. Hip

    Hip Senior Member

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    That's a good idea, I'll look into that.
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    @daisybell I tried LDN earlier this year (maybe in June?) at only 1 mg and was not able to tolerate it. It literally kept me awake the entire night (I mean not even sleeping for five minutes) and I normally sleep fairly well. I was willing to try it in spite of Hashimoto's Disease but felt so sick from the 1 mg that I couldn't imagine increasing to the 3 or 4 mg that most PWC's take. Also, 2-3 days per month I have to take a painkiller (1/2 of a Norco) for cramps so would have to be off the LDN for those days which would seem to mess up the protocol. Also, you said you take it at 6 am and go back to bed. Are you able to sleep at that point or does it keep you awake?
     
  4. Ema

    Ema Senior Member

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    There is a list of microglial inhibitors in this thread:

    http://forums.phoenixrising.me/inde...-me-cfs-fibromyalgia.30605/page-2#post-468439

    Herpes virus infections of all types are thought to increase microglial activation so in that respect anything, including Famvir, that reduces herpes viral infections should also reduce microglial activation. Valcyte may also work by other mechanisms as well, I'm not sure.
     
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  5. Sushi

    Sushi Moderation Resource Albuquerque

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    That could possibly be way too high a starting dose for you given how you have responded to other supps, meds. Many have found they had to start much lower (like .25 mg) or take it during the daytime--which is fine.

    Sushi
     
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  6. Sushi

    Sushi Moderation Resource Albuquerque

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    I was very interested to see that rifampin is on that list, as I am taking it.

    Sushi
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    @Sushi It was prescribed by my former ND who said that 1 mg was the lowest dose possible (but in retrospect that doesn't seem logical b/c a compounding pharmacy could prepare any dose needed I assume?) I would have to take it during the day time and definitely could not tolerate it at night. I will discuss it at some point with my cfs dr.

    @Ema Thanks for posting that list and sadly, I have never taken a single thing on it!
     
  8. Sushi

    Sushi Moderation Resource Albuquerque

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    You can get it compounded at any dose. Personally, I crush a 50 mg tablet and mix it in 50 mls of distilled water. Then I measure my dose with an appropriate syringe. For instance, using this method .25 mls would equal .25 mgs. The liquid allows you to change doses with ease.

    Sushi
     
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  9. daisybell

    daisybell Senior Member

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    I am usually able to go back to sleep...
    I did have some side effects when I started- stomach cramps and feeling a bit sick and not wanting to eat. That has gone now. I think I have been lucky in my system adapting to it quite easily.
    I was advised to take it in the morning because of the likelihood of insomnia.
    I'm sorry it didn't work for you, but perhaps as Sushi suggests, you might tolerate a really low dose??
     
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  10. Valentijn

    Valentijn Senior Member

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    This is really the heart of the matter. Some threads are well-suited to discussing causative theories and nit-picking the accuracy of claims, and others are not.

    Generally speaking, if someone starts the thread by talking or asking about their personal symptoms and treatments, it's nice to avoid ambushing, derailing, and/or upsetting them with tangents that aren't directly relevant to their questions.

    Subforums where patients often don't expect or want these sorts of debates include: Community, Symptoms, and Living with ME/CFS. More appropriate areas for questioning theories are in: News and Research, General ME/CFS Discussion, Treatment and Therapy, Doctors and Diagnostics, and Alternative Diagnoses.

    If someone feels a need to disagree with a patient's underlying assumptions, when it's not really the topic of their thread, it might be best to make a brief comment and link to a new thread in a more appropriate area. Then there can be a rigorous scientific debate there, without anyone feeling particularly attacked, or upset at an extensive disruption.
     
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  11. adreno

    adreno PR activist

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    Just remember that advicing against a treatment is helping the patient, also. But I agree these things should not be turning into huge discussions.
     
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  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I actually think this is unfair, Valentijn.

    Gingergrrl's first question was:
    1) How exactly does an immune modulator work and how do I know if a medication or supplement fits into that category?

    I gave a response to this which I do not think any body can really argue with - immune modulator is a loose term for anything that can change the immune response - at least that is how immunologists would use it. And since it is clear from the discussion that there is continued debate about how any of these drugs work there is no clear answer to how an immune modulator works - even an individual one. This is absolutely relevant to the question. It is an answer to the question.
     
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  13. Valentijn

    Valentijn Senior Member

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    @Jonathan Edwards - I wasn't necessarily referring to this thread or any specific comments or commentators in it. But it is something which happens from time to time, and can be upsetting, so it's nice to stay pretty focused on the questions being asked instead of the presumptions contained in those questions.

    And since we all know that most (all?) treatments aren't backed up by studies in ME/CFS patients, and we are pretty clear in labeling things as merely being personal experience or logically plausible, some people will also get a bit annoyed when the "it hasn't been scientifically proven" mantra is repeated again and again.

    No one's going to mistake our personal experiences for a doctor's medical advice to do something. But we do need to frequently discuss our personal experiences in the context of the huge gaps in scientific research regarding ME/CFS. And when the "unproven" spiel pops up in the middle of a thread, it often looks and feels like an unwarranted rebuke for daring to share our personal experiences and experimentation.
     
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  14. Ema

    Ema Senior Member

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    I agree but advising against a treatment because of a specific, personal experience with said treatment is totally different than being against *all* treatments because there is no RCT, testing isn't perfect and we aren't all that sure how most things work anyway. It's the repetitive dismissal for the same reason across treatment and testing threads that gets frustrating to me.
     
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  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Most of us are also working under the care of a doctor too, some who have treated many cfs/me patients and have a variety of clinical practice working in primary health care.
     
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  16. Hip

    Hip Senior Member

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    Another issue regarding debates about the science and the evidence base for a ME/CFS treatment is this:

    Many ME/CFS patients on this forum (and elsewhere) will often work with a biochemical hypothesis, rather than an established medical fact. Patients typically use the hypothesis to guide them to a treatment, which usually involves taking some supplements.

    In this way, by taking these supplements, patients are testing their hypothesis, in the sense that if they lead to improvements in symptoms, then perhaps there was some truth to the hypothesis (though even if a treatment works, it's hard to know what's really going on biochemically).

    I have coincidentally just begun a new variation of Th1-boosting immunomodulation for ME/CFS of my own devising, where I am taking inosine to try to shift the immune response towards Th1, and at the same time, I am taking supplements that specifically boost interferon gamma. My hypothesis is that by increasing interferon gamma, this should help clear out the non-cytolytic enteroviral dsRNA that is associated with ME/CFS. (Why this might work I explain here; basically IFN gamma induces the enzyme dicer which destroys viral dsRNA).

    The fact that the validity notion of the Th1 / Th2 balance has a question mark next to it is not a sticking point for me because my whole treatment enterprise is based on hypothesis to start with. ME/CFS patients are generally working with loose hypotheses that may have some supporting evidence, rather than working with solid medical fact (mainly because there is a dearth of the latter when it comes to the ME/CFS research field).



    Since I came down with ME/CFS, I have devised hundreds of hypotheses. These hypotheses just occur to me while reading articles on ME/CFS biochemistry, and most of the time I actually try to test out my hypotheses using supplements, and sometimes drugs that have a low risk profile.

    In addition, there are hundreds of established treatment options developed by ME/CFS doctors and researchers that ME/CFS patients can experiment with. I have tried many of these too. Most of these treatments are tried and tested by these clinicians, and thus are (hopefully) low risk options (but obviously when you devise and take your own treatments, there may be more risks).

    So much of the medical discussion on this forum is really about hypothesis and speculation, as well as trial and error testing of these hypotheses, even if people don't always make a clear distinction between when they are hypothesizing, and when they are stating an established medical fact.



    One thing very particular to ME/CFS is that treatments that work very well for one patient may not work all for the next, and very often, will actually make them feel worse.

    So logically — and this is a very important point — to maximize your chance of treatment success, ME/CFS patients should take the time to test out as many treatment protocols as they can, because patients can make major improvements to their symptoms if they hit upon the right treatment. One experienced ME/CFS researcher (I forget his name) specifically advocates this approach.

    But finding the right treatment for a patient is almost a random process of going through the dozens of established treatment options available (as well as any of your own devising). You have to keep going, until you find the treatments that work for you. This process may take years, and can be very time consuming (and can be cognitively challenging for patients with significant brain fog); but hey, with ME/CFS you're not going anywhere anyway, so you may as well dedicate your time to this. Ideally you would do this with an ME/CFS specialist, but this is not available to many patients.



    Another very important benefit of this process of trying out different treatments is the psychological morale-boosting effects it generates. I know that when you are down in the dumps and feeling without any hope in the quagmire of this illness, then the prospect of a new treatment to test appears like shining light in the gloom.

    Every time that I have plans to start testing a new treatment, I am filled with hope and optimism that it may be the answer for me. The morale-elevating power of this should not be underestimated. I notice that my mood is greatly improved by the prospect of a possibly beneficial treatment, and my days are then filled with purpose as I organize myself to start this treatment. I would wager that many other ME/CFS patients are the same in this respect.

    The fact that from past experience most of the treatments I have tried make no difference, or make me feel worse, does not alter the morale boost that comes from pinning your hopes on the next new treatment. This morale boost is not the placebo effect, because when it comes to actually trying a treatment, I think most experienced ME/CFS patients are fairly objective (placebo is about expectation, and ME/CFS patients know from experience that a new treatment is just as likely to make them feel worse as better, so expectations are tempered by this knowledge). No, it's more about the raising of the spirits when there is a new treatment hope on the horizon.



    So testing out new treatments has a twofold value: firstly, each new treatment you plan to try puts you in an optimistic mood, which is much needed in ME/CFS; and secondly, every now and then you do actually find a treatment that provides significant benefit, which is hitting the jackpot for ME/CFS patients.

    Thus the discussion threads on this forum are really as much about the morale boost arising from pining hopes on a new treatment as they are about disseminating treatment protocols, medical facts, biochemical hypotheses and treatment anecdotes.
     
    Last edited: Nov 19, 2014
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  17. Sidereal

    Sidereal Senior Member

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    One would think that the primary purpose of a forum like this is for patients to share their experiences/hypotheses/opinions/speculation and to provide emotional support. If we limited ourselves to evidence based treatments then this forum could be reduced to a single thread: "There are no FDA approved treatments for chronic fatigue syndrome. The only treatments recommended by the NICE guidelines are cognitive behavioural therapy and graded exercise. Discuss." If we limited ourselves to reliable, reproducible science then there would be literally nothing to discuss, we would be down to zero threads.

    Sometimes these days it feels like we can't share our life experiences without having to be super careful about how we phrase everything and that every statement must be backed by citations, preferably multiple, and not just any old citation, but peer reviewed papers and not from dodgy open access journals or fringe papers by ME/CFS clinicians-amateur researchers but from real scientists affiliated with large research centres.

    I think most people posting here are patients who are not used to the hazing rituals of academic conferences, journal clubs and the peer review system so may find being challenged at every turn quite stressful. I am not saying we should allow quackery and ME/CFS myths to continue unchecked, but a balance needs to be struck somehow so that people don't feel totally stifled.
     
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  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I am sorry to continue off track for Gingergrrl but I think this discussion is important and useful. Hip has made some useful points.

    Yes, but this thread is this thread and this discussion was in response to my making some comments that were very focused on the question.

    I am aware that there about 8 regulars who get annoyed and I am sorry about that. But there is a larger number of people who indicate that my questioning is welcome and helpful. That does not often get into the threads. It comes in conversations, emails, 'likes' and suchlike; I am told not to stop doing it so I am not going to. From my perspective any discussion of medical issues is going to need a critical approach. Maybe some other less vocal people on PR get a bit annoyed when objections to a scientific approach are 'repeated again and again'? To be honest, this seems to be what takes things off track. Otherwise we just have a range of relevant opinions.

    Maybe PR is changing a bit. I was told that I was being asked to get involved because there was a feeling that PR should try to move on to new things. Maybe setting the scientific agenda. I don't want to stop people exchanging personal experiences but, as I say, the hijacking of the thread seems to me more to do with raising objections to serious debate rather than the debate itself.

    The common cause is trying to get rid of ME. Following that is bound to mean breaking a few eggs so I am going to follow the majority verdict.
     
  19. Hip

    Hip Senior Member

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    To echo what Prof Edwards says about the potential risks of medical experimentation:

    I'd like to share a little story of how one of my self-treatments ended in tragedy, as I accidentally precipitated fairly severe viral meningitis in myself in 2005, via one of my medication experiments. This meningitis led to permanent personality changes, as well as a permanent loss of some important mental faculties. Non-trivial brain damage, in other words.

    I'd like to mention this story because it does illustrate the potential of any experimentation to go terribly wrong. This is how it happened:

    Two years after I caught a respiratory virus which had rapidly precipitated potent psychiatric symptoms in me (such as anxiety disorder and anhedonia) as well as triggered mild (at that stage) ME/CFS symptoms, the sore throat this virus caused was still going strong. I wanted to try an anti-inflammatory approach on my sore throat, and read that magnet therapy was an alternative medicine treatment for inflammation.

    I just happened to have a very powerful neodymium magnet (neodymium magnets are around 20 times stronger than a fridge magnet). So I thought I would place my magnet just left and right of my Adam's apple (and D'oh, right above my carotid arteries, which I later realized was a likely causal factor for the meningitis). I was not really thinking too much about this therapy; it seemed like an innocent and easy thing to try; so I applied the magnet to my throat area for around 5 minutes.

    Directly after this I went for my usual daily 1 mile run. About halfway through that run, I started to get strange feelings mentally, and I could no longer run properly, because I found myself stumbling. I felt some inflammatory sensations in my head, and very quickly, within a short time, all hell broke loose.

    Essentially it seemed the virus managed to penetrate into my meninges, precipitating meningitis, which then caused me even more nasty psychiatric symptoms, significant permanent personality changes, and loss of certain mental faculties — some faculties that I really valued. An hour or so later, I really was no longer the same person that I was before. It was the worst thing that has ever happened to me. Well, that and sinking into full ME/CFS soon after.

    I am reasonably sure it was the neodymium magnet that precipitated my meningitis, because this meningitis occurred almost immediately after my throat magnet therapy; and also, several acquaintances who caught the same virus as me had spontaneous myocarditis-driven heart attacks some months later, so I already suspected that my virus had the ability to suddenly infect organs.

    The magnet's ability to reduce inflammation may have suppressed my immune response enough such that the virus was then able breach into my meninges. (Though that explanation does not quite make sense, because MRI magnets are around 40 times stronger than my neodymium magnet, but nobody gets meningitis after MRI scans. Possibly better explanation might be that the water component of the blood passing through a powerful localized non-uniform magnetic field may be reduced in viscosity — magnets can alter water viscosity — thus allowing the blood to penetrate further into the tissues, carrying the virus with it. Or something like that.)



    But who would have suspected in advance that placing a strong magnet by my throat would have resulted in significant and permanent brain damage! You have to laugh really.

    Anyway, the moral of this story is that a nasty outcome may inadvertently arise even in the most innocent of medication experiments.
     
    Last edited: Nov 19, 2014
  20. alex3619

    alex3619 Senior Member

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    There are separate agendas clashing here. From a scientific perspective, and focusing on research, I agree with comments like this.

    The thing is patients need to be able to discuss options as well. Nearly everything involving ME and CFS research as applied in clinical practice is not sufficiently supported by science. However its the best we have. So even something as simple as a doctor suggesting "take paracetamol for your headache" needs to be treated cautiously by us as patients, and often we might ask what others experiences have been with this. (There are good reasons to think paracetamol and many NSAIDs may be problematic in ME.)

    Risk analysis is sparse and often wrong with most conventional drugs and ME. WE, the patients, are the people who have the most experience, and most relevant experience, though we really need a lot of patients to being crowdsourcing factors in risks.

    A patient-science agenda, and researcher-science agenda, is not the same thing as a patient risk-benefit evaluation agenda. Such discussions are often not scientific, but people need to be able to make the best decisions they can on limited information, and so we need to be able to discuss things. In a way its a lot like EBM, evidence based medicine - frequently its not scientific either, but docs, researchers and agencies still do it. The IOM is a case in point. From a research or major policy perspective this is problematic, but when an isolated patient wants to make an informed choice then they either have to choose ignorance or choose possibly poor quality information.

    Until the science advances enough this is going to continue.

    I would like to quote my lemon rule again:

    http://forums.phoenixrising.me/index.php?entries/28-rules-of-thumb.941/

    PR is not exclusively a research forum. It has other roles, including patient support. When agendas cross and are not made explicit there is going to be conflict.
     
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