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Given Dr Lerner and Montoyas findings, why arent a subset of us getting treated now?

Discussion in 'Latest ME/CFS Research' started by snowathlete, Nov 3, 2011.

  1. snowathlete

    snowathlete

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    Hi Hip,

    I think what youve done is very good and clear. Perhaps a flowchart isnt necesary?

    Personally, I would probably promote round 3 to round 2 position, but thats just my opinion, and others may disagree, which of course is fine. That is probably going to be the difficult bit; working out the best order. Ideally it would be based on hard facts, but those are hard to come by, so maybe some polls or something?

    Mind you, whatever the order, I guess its open to people skipping one round in favour of another if they think it is likely to be more applicable to them.

    I think the main thing is having the information available and in an easy to follow format like you have already produced.

    list of diseases with similar symptoms to CFS.
    Regarding this side of things, it might be worth adding some others, which presumably means creating our own list: HIV, Hepatitis, Para Thyroid, Diabetes, Lyme

    I wrote out a sort of intro, some of which is similar to yours, but you might want to incorperate some of it on your site if you think some of it is useful:
    This roadmap has been created as a collaborative project by members of the PR, to help inform people of the treatments available for ME/CFS and the prior tests that you should take in order to establish if a treatment might be suitable for you, and to exclude other diseases first, that are often easier to treat.

    The things higher up on the roadmap are those treatments that have some record of success and that are carried out by respected ME/CFS doctors. They are those treatments that we believe are the most likely to result in you making a positive response. However, this should not be taken as medical advice, and you should make your own decisions on which treatments are best for you. With this in mind, if you feel drawn to a particular treatment on the roadmap then by all means give that area of the roadmap higher priority.

    Some tests can provide good information about your condition, but may not have a corresponding treatment, and thefore these tests will appear lower on the roadmap as the primary objective is to work toward treatments that might work.

    This roadmap is an ongoing project and aims to be as comprehensive as possible, but it is not an exhaustive chart of treatments, as there are so many different 'treatments' available. This roadmap also does not cover pacing, or resting, which although beneficial as means of managing the illness, are not strictly speaking a treatment.
    If however, you think something is missing and should be added to the roadmap then please contact the administrators.

    A note about tests.
    This roadmap promotes the use of tests before treatments where they exist. However, some tests are known to be unreliable, and will be noted on the roadmap as such. In addition, some tests are expensive, or are not available in all countries, and therefore you may choose to bypass the test and go straight to treatment. This can be a helpful means of empirical testing in itself, as a treatment working may signal you had a problem, even though you did not test for it. Before undertaking any treatment you should first become familiar with any risks of taking that treatment and if unsure, you should run it by a good ME/CFS doctor first.

    A final note about testing: We have tried to group tests together that are related, but in order to save money it may be worth testing one at a time if you are concerned about the cost.
     
  2. Hip

    Hip Senior Member

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    There are some very good points and phrases in your intro, I have now incorporated some of them into the CFS roadmap text, thanks.


    I also was thinking that round 3 might best be in the round 2 position; I am not sure on this either.

    The rationale, as we agree, is prioritizing the tests and treatments that are, statistically speaking, likely to have the largest beneficial treatment impact in improving CFS symptoms.

    The first round is a focus on the primary causes and associations of CFS.

    The second (as it stands) round I thought should be focused on the co-infection, and co-morbid conditions, that are known to make CFS symptoms worse. So this is things like gut dysbiosis, leaky gut, IBS/SIBO, most of which are easy to test for, and their treatment can bring noticeable symptom improvements. Fixing leaky gut sometimes puts CFS patients into full remission: see here: http://www.ncbi.nlm.nih.gov/pubmed/18063928

    I may be slightly biased on this, as I had IBS as a prior condition, and I know my state of gut health makes a large impact to my symptoms; and this also applies to many people with CFS. However, I'd like to also include in this same 2nd round other co-infections and co-morbid conditions linked to CFS, like interstitial cystitis, overactive bladder, chronic kidney or bladder infections, though not all of these have good tests or treatments available, even though they may well be important factors in CFS. So by our prioritization system, they are probably best deferred.

    Perhaps some of the things in the 3rd round can be moved to the 2nd round, like perhaps Giardia lamblia (it's linked to IBS anyway) and Mycoplasmas ?

    The CFS Testing & Treatment Roadmap as it stands is here: https://sites.google.com/site/cfstestingandtreatmentroadmap/
     
    Last edited: Jul 13, 2014
  3. Hip

    Hip Senior Member

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    I am not sure that the heavy metal test should be place in the 2nd round of tests, though.

    What's your view, snowathlete?

    I have not read much about CFS caused by heavy metal overload, so I am guessing that this is a rare causal factor in CFS. Furthermore, I am not sure if there is much you can do about heavy metal overload. Chelation therapies don't seem to have shown any clinical efficacy. So this is rare, plus it is not very treatable? Correct me if I am wrong on this.

    On a different matter: I noticed there are some wiki pages on this PR forum. However, they don't seem to work like a wiki: they seem to be more like regular forum threads.

    This CFS Testing & Treatment Roadmap would ideally be set up as a wiki where multiple people can work and update the info.
     
    Last edited: Jul 13, 2014
  4. snowathlete

    snowathlete

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    I would say no too. My opinion (having not really looked into it much either) is that heavy metals may be factors for some people, but not everyone and may even be a seperate issue, and not directly linked to ME. I would be very surprised if heavy metals turned out to be the cause of ME in most people. Thats just my view, but i know for some people it can be important. I guess its a case of how many, compared to other things on the roadmap? Wherever it appears on the roadmap, people can jump to that section if they think it is a particular issue for them.

    The gut stuff is interesting and i dont know much about it. i do have IBS which as you point out is the case for alot of people with ME. I know alot of people take probiotics so a fair amount of people do something in this area. Mind you, i cut out preservatives, sugary stuff, and caffeine and I dont really get much of a problem now. I dont know how many ME doctors are looking into this area, but i would take that as a measure of how likely it is a cause of ME compared to the stuff in Round 3, which again, we could look at how much ME doctors look at that stuff as a sort of measure of priority.

    Maybe some others will chime in with some opinions, and if its still fairly even then you should get the deciding vote i think.

    Yes i spotted that too. I asked admin about it, but unfortunately because the site is experiencing some load issues at the moment the wiki features have been/or are being, shut down for a bit. Admin reccomended using google docs as this can be shared with a group and people can collaborate on it. Probably a good idea.
     
  5. Hip

    Hip Senior Member

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    It would certainly be good to have some collaborative document sharing for this roadmap, so that it can be maintained, updated and improved. Google docs is a little glitchy, though, I find.
     
    Last edited: Jul 13, 2014
  6. August59

    August59 Daughters High School Graduation

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    Is Dr. Montoya ever going to complete his study looking at all the pathogens. I know there is a post that keeps popping up occasionaly about needing more participants. How is that going? Heck tell him to send me the tubes and I'll pay for shipping. Has there been any indications as to what he is finding or not finding?
     
  7. Timaca

    Timaca Senior Member

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    The data is being analyzed now. I don't think they need any more participants. I haven't heard talk of results.

    Best, Timaca
     
  8. searcher

    searcher

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    Do you guys have an opinion on what the document should say about diagnosing an "active" infection? Most non-CFS doctors would say it requires a positive IgM, and a lot of CFS doctors would say a high IgG indicates that a patient likely has an active infection (although the doctors tend to have different cutoffs for what constitutes a high IgG.) And, as far as I know, there isn't much research about the distribution of IgG values among the overall population, so there seems to be a lot of guesswork involved. Finally, some doctors seem to treat low NK cell function as indicative of an active Herpes virus infection, but I don't think that is widespread.
    Timaca- Are you sure they ran the pathogen tests and are at data analysis stage? Last I heard two weeks ago they were prioritizing other research for awhile due to the CFI.
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think high IgG or nk dysfunction is just a guide of active herpes infections as i dont think they have accurate testing. Another test my doc use is lymphocyte sub set test looking at cd8 t-cells in ebv/cmv etc. Treatment trial is probably the best indication, but can be expensive and also need to be on av's for awhile to notice a difference in symptoms. Its all an educated guess. Autopsies of cfs/me patients has shown herpes like lessions in the nervous system and spine etc.

    cheers!!!
     
  10. searcher

    searcher

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    Thanks heapsreal. I think this is our primary issue- we don't have good tests that confirm active infections and don't know for sure the cause of our nk dysfunction. I have had the Montoya tests done, but Montoya has found it often takes 6+ months to find out if valcyte will work, so it's hard to do an empirical trial when the cost is so prohibitive (although famvir is much cheaper, as you have very helpfully pointed out.) But if we could the current IgG levels that the top docs look for, then it could be useful for a flowchart.
    All that said, I really like the idea of an action-oriented one or two pager that helps doctors decide what tests to run and what treatments to try. Many of us have read the CCC and ME ICC, but I can't see many busy primary care doctors (AKA GPs) reading them.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Yes titres levels can be helpful and also a way to measure the effects of av treatment.
    Titres are very hard to get tested for in australia, maybe because the cost is then put back on the medical system and if herpes viruses are a problem, then the govt would have to help cover the cost of av's. Only obvious herpes infections like shingles, or herpes 1 and 2 are covered because they can be seen with the naked eye, the same cant happen with ebv, cmv, hhv6.
    I think its a type of conspiracy to avoid increasing medical costs that the govt dont want to pay. Giving us a psych diagnoses and giving an ad as a treatment is alot easier and cheaper to diagnose and treat???
     
  12. searcher

    searcher

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    Although we can get our titers tested in the US (although usually out-of-pocket,) very few people will treat us with anything other than AD even if the IgG is sky-high. Interestingly, Montoya has said he thinks antivirals may be helping us more as immune modulators than by their direct antiviral action, so I think even the best doctors don't really know what the treatment is precisely doing. I wouldn't be surprised if our governments knew more, though.

    But, I think we shouldn't have to know for sure how the treatment is working- enough doctors have found antivirals help based on viral titers, so a good doctor should be taking this into account and trying treatments that have the potential to work (unlike doing nothing which is almost guaranteed to fail.)

    Montoya has said what titers he looked for back in 2007 to allow patients to enter the valcyte study, but I don't know if he still looks for the same levels. I think Kogelnik (ho did the initial study with Montoya) recommends valcyte for low NK cell function, even if titers aren't especially high. I wonder if Montoya is doing the same thing now (antivirals based on NK function instead of titers.)
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    http://virology-online.com/presentations/index.htm in this link is a slide about herpes virus, what was interesting was that it said that IgG antibodies for cmv only have to be present for virus to reactivate in immunosuppressed patients. I havent read it all yet but assume it also occurrs in ebv and hhv6 etc

    There is another slide on herpes infections in immunocompromised patients, so this will be an interesting read when i get to it.

    I think our problem with cfs/me is that the medical community dont realise we are immunocompromised or else they would take our high IgG titres and cd8 t-cells etc as a sign of active infections.
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Now i have just come across EBV and describes chronic mono where lymphoproliferation disease or lymphoma occur and the patient dies from this. Now doctors say dont worry about IgG titres etc WTF. It also states that there are know known treatments, maybe they need to talk to dr lerner or montoya. Why is their research ignored???

    I know a treatment CBT will cure lymphoma???????????????????????????????
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Also states that IgG antibodies 4 times greater then normal indicates viral reactivation, so there information out there, just not many docs read it i guess????
     
  16. searcher

    searcher

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    I found the following quote in Kogelnik's paper from 2006:
    (See http://www.cfids-cab.org/rc/Kogelnik.pdf for the quote and other information)

    So if we use the 4x theory and look at healthy controls then viral reactivation is likely if:

    HHV-6 IgG>=1:320 and/or
    EBV VCA IgG>=1:1280

    If we use the lab workers then viral reactivation is likely if:

    HHV-6 IgG>=1:640 and/or
    EBV VCA IgG>=1:2560

    These could be useful guidelines, although I think antivirals are helpful for people without high titers.
    I don't know if there have been corresponding tests for parvo IgG in healthy controls.
     
  17. Tristen

    Tristen Senior Member

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    My EBV VCA IgG is >8.0, but my doc says it's in remission because the "EBV Early Antigen Ab, IgG" is low <0.2. I need to learn to interpret this test better. Just a bit suspicious of the results. But I do find this especially curious since my doc has consulted extensively with Dr K.

    I found this line from the pdf most interesting: "Also, there may be persistent viral infection in the CNS tissue with no trace in the peripheral blood".
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i also wonder if when we get these viral titres down to normal, how often does it reactivate and increase once of antivirals, or is it a matter of staying on them for a certain amount of time to consolidate the effects of av's. Im at a stage where i have my viral markers within the normal range but hesitant to come off antivirals as my nk function is still low, so with a crappy nk function i think we are still at risk of these viruses reactivating again?? Plus im still feeling abit off and because of this low nk function seem to be getting increased sinus problems which are really knocking me, also i think if coming off av's and other infections keep cropping up, these other infections could also make these herpes viruses reactivate??

    cheers!!
     
  19. Timaca

    Timaca Senior Member

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    searcher~
    To clarify, they are running the pathogen tests and doing gene studies now. The immune testing is done. That is my understanding, anyway. :)

    Best, Timaca
     
  20. ChuckG

    ChuckG

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    So based on the data in Table 2, I probably was EBV positive on 8/23/2007. Better yet I was also EBV positive on 10/04/1993, 2 years and 7 months minus 3 days after clear onset of symptoms. Perhaps I should research how many doctors I have seen!

    Less clear the HHV-6.
     

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