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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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A LOT of totally incorrect/wrong information and advice given

Discussion in 'General ME/CFS Discussion' started by leokitten, Oct 18, 2013.

  1. leokitten

    leokitten Senior Member

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    The infectious disease specialist I went to had no idea that tell tale symptoms, clinical signs and very high IgG antibody titers are suggestive/indicative of a possible chronic or reactivated infection. He looked at my IgM titers and because they were negative he said, "nope you have no active infection these IgGs are just from past infections".
    aimossy likes this.
  2. snowathlete

    snowathlete

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    it's an eye opener isn't it. I knew there was an illness called ME/CFS but I knew basically nothing about it before I got ill, and I just assumed, rather naively, that people with the illness were being helped out and research was progressing toward figuring it out with an appropriate level of urgency. After all, that's one of the things we pay our taxes for, right?
    I had no idea that there were SO MANY people suffering from the disease, that it was this bad, and that the community was so neglected and mistreated. Like you, I read about people having this illness for decades and I found it heartbreaking. Though I myself am now closer to 10 years than 5 of having this illness now. Change is slow.

    As a scientist working with cancer, how aware of ME/CFS/CFIDS were you before you got ill?

    I hope you are able to find a way to recover quickly and fully.
    aimossy, Delia, August59 and 3 others like this.
  3. wdb

    wdb Admin

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    Where is the evidence base for this ? how can you rule out the possibility that some people might come down with a mild case of ME and recover and others might come down with a more severe form and take longer to recover or don't recover. Attempted treatment may be irrelevant.



    Again where is the evidence for this, has this been demonstrated in clinical trials ?
    Delia and SOC like this.
  4. vamah

    vamah Senior Member

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    I wish doctors followed this advice. My "specialist" refused to treat me for herpes viruses and said he wouldn't treat me even if they were high because valcyte was not a unanimously agreed upon treatment. Unfortunately, many doctors (especially in managed care) don't think that "scientifically reasonable" is a high enough standard.
    peggy-sue likes this.
  5. vamah

    vamah Senior Member

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    Meant to say my doctor would not even TEST me for herpes viruses. I paid for my own tests and hhv 6 was 1:1280. Made a formal complaint no no avail.
    Delia and peggy-sue like this.
  6. leokitten

    leokitten Senior Member

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    Before this year not so much, only knew that the scientific community finally knew that this disease is physical and not psychological like previously thought.

    Some of the cancers I research are EBV or HIV infection related, so I already had a lot of information and knowledge on viruses so that helped a lot with the viral infection aspect of CFIDS.
    Sing, aimossy, justy and 3 others like this.
  7. SOC

    SOC Moderator and Senior Member

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    Absolutely.

    We also need to keep in mind that civility needs to exist on ALL sides, and includes trying to avoid arrogance and paternalism. Treating other members like inferiors is not civil. That said, we all suffer from different degrees of pain, brain fog, and frustration, so none of us is likely to be at the top of our social game. Understanding and tolerance of our differences -- educational, professional, social, financial, medical, etc, etc --- is crucial to our mutual support and progress.
    Dainty, Sing, beaker and 11 others like this.
  8. vamah

    vamah Senior Member

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    That's why forums like this can really help people. If I hadn't been told by someone else that my doctor was full of it, I would have accepted what he said and done what my HMO wanted me to do: take more antidepressants and leave them alone.
    beaker, Delia, peggy-sue and 3 others like this.
  9. chronix

    chronix

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    No one knows what the role of viruses in ME is, if indeed they even do play a role.

    We can speculate, as we do on this board. But no one knows yet.

    Why don't you tell us a bit more about what you think of Rituximab? I'm personally interested in that and have tried reading a bit of literature. But keep in mind, I don't have a scientific degree, so will be unable to talk back in those terms.
    justy likes this.
  10. leokitten

    leokitten Senior Member

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    This is ABSOLUTELY NOT TRUE. There is a good deal of scientific research which is indicative that certain viruses DO play a role in CFIDS as possible initial causes (for some cases) or contributing factors to the disease worsening and/or symptoms.

    It would take me a while to pull every paper out for you and show you that there is a likely role. Where should I start? Viral caused dysregulation of mitochondrial function? Viral dysregulation of the immune system and immune system suppression? Viral infection of many types of different cells (brain, vascular, etc) and the changes they cause in cell function?
    WoolPippi, Sing, Nielk and 1 other person like this.
  11. SOC

    SOC Moderator and Senior Member

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    :) "Brain fog" hardly describes our cognitive impairments does it? Losing things, losing words, losing concepts, losing abilities (like driving a car).... "brain fog" is a lot like "fatigue".

    I, a (former) research engineer and college instructor, couldn't read a book or even an article because of focus problems (visual and mental) resulting from ME/CFS. That was a major trauma for me. My identity was built around my professional skill. Poof! Gone in a metaphorical instant.

    Brain fog at that level is what put a number of us here out of work before the physical toll took over. No one wants an engineer, scientist, researcher, lawyer, whatever, who can't read and follow a page of text.

    A lot of us have had to stop driving because of cognitive issues. Brain fog and it's associated cognitive brethren are a major nightmare of this illness that isn't talked about enough, imo.

    I'm glad to say that Valcyte treatment (for HHV-6 in my case) improved the cognitive problems hugely. I can read a book and drive these days. :balloons: Unfortunately, a huge improvement is still not enough to make it as simple as it was pre-ME/CFS to read technical papers and the like.
    Sing, aimossy, Delia and 8 others like this.
  12. lansbergen

    lansbergen Senior Member

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    Yes, please do
    aimossy likes this.
  13. snowathlete

    snowathlete

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    That alone is really encouraging, that at least some scientists not working directly with the disease, recognize at last that it is physiological.
    Sing, aimossy, Delia and 1 other person like this.
  14. SOC

    SOC Moderator and Senior Member

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    While I agree with you completely on this point, it is certainly NOT considered a scientific certainty. Try asking the CDC, or the NIH, or HHS, or the NHS in the UK, or pick almost any medical authority in any country. The scientific/medical authorities the world over say the scientific evidence for viruses in ME/CFS is inconclusive at best. That is the very reason why the vast majority of ME/CFS patients cannot get antiviral treatment or even testing -- medical science has (so far) declared that treatable viruses are not a major factor in ME/CFS. I'm surprised that with all your reading in the ME/CFS arena -- papers, blogs, and all those other sources you listed -- that you haven't come across this problem.

    Let me repeat to be clear -- I agree that that viruses play a major ongoing role in ME/CFS. Very, very many patients agree with that theory. The current medical establishment does not.
    Delia, Snowdrop, justy and 8 others like this.
  15. chronix

    chronix

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    I'm not saying viruses can't cause this illness or be reactivated because of it. But bacterial infections can also play a triggering role like we see in Post Q fever, post lyme, post rickettsia etc. Likewise, so can physical trauma, mental trauma, chemical exposures etc.

    But how can you say you know how to recover completely from this illness by for example treating viruses, yet there are people who have no viral activity? Your studies are probably interesting and informative and above my head, but there's still no evidence that pathogens play a role in everyone. Thus, at this stage, we can't assume that our doctor is wrong when he says we probably don't have a viral infection, when neither the bloodwork nor the symptoms match. Viruses may play a role in your specific concoction of cfs, but not mine.

    Maybe we actually agree on what is being said here. Its your claim in your initial post that bothered me.
    aimossy and Tito like this.
  16. leokitten

    leokitten Senior Member

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    The Rituximab idea was started by a group in Norway at Haukeland University. Here was their first paper and then clinical trial:

    Clinical impact of B-cell depletion with the anti-CD20 antibody rituximab in chronic fatigue syndrome: a preliminary case series.
    http://www.ncbi.nlm.nih.gov/pubmed/19566965

    Benefit from B-lymphocyte depletion using the anti-CD20 antibody rituximab in chronic fatigue syndrome. A double-blind and placebo-controlled study.
    http://www.ncbi.nlm.nih.gov/pubmed/22039471

    As we've seen happen before (with the Montoya Valcyte papers and trial), the initial very small study showed positive results but then the larger clinical trial didn't really reproduce those results and yielded more questions than answers as to what is possibly going on.

    I am looking forward to seeing the results of the Kogelnik clinical trial using Valcyte + Rituximab if he ever does it.
  17. wdb

    wdb Admin

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    I have to agree with chronix here, you can cherry pick a few papers if you like but there really is no scientific consensus as to the involvement of viruses in ME, the evidence is far from conclusive.

    Here is one of the most recent, it's moderately encouraging at best.

    Randomized clinical trial to evaluate the efficacy and safety of valganciclovir in a subset of patients with chronic fatigue syndrome


    aimossy and Delia like this.
  18. leokitten

    leokitten Senior Member

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    Yes you are totally right there was just a misunderstanding. You are right viruses don't play a role in every case of CFIDS sorry I didn't mean that. I meant that if you get lab work done and show that you have high viral and/or bacterial antibody titers or other results indicative of infection it is likely that it plays some role in your particular disease.
  19. chronix

    chronix

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    I'm going to delete my inflammatory post on page 2.
    I apologise. But hey, seems at least one person had a chuckle ;)
    Sing, peggy-sue, snowathlete and 3 others like this.
  20. chronix

    chronix

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    Nevermind, see it was edited by a mod.

    Yes I agree with you now. In my own case, I'm still on abx for positive bacterial infections and it has made a difference. But I see many people who are on abx for months (even years) with no effect. I see that as a dangerous and irresponsible practise by both patient and doc. Here I'm talking about Chronic Lyme disease of course.

    Have you worked with rituximab?

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