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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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ME/CFS B-Cell Study/Rituximab Implications

Discussion in 'Latest ME/CFS Research' started by Gemini, Dec 7, 2012.

  1. lnester7

    lnester7 Seven

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    Not all CFS have high B cells. I know a few here that have Low B, high T cells. It depends of each patient's subpanel.
    When I mentioned the Rutixumab to Dr Rey, she said they don't do it but the first thing she did was to refer to my B cell levels (I have high B cells, Low T cells).
  2. liquid sky

    liquid sky Senior Member

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    Not everyone will have B cell pathology, but that's a start. We need to get each subset tested for what they DO have. This is a big clue and it could help bring ME into the status of a bonafide autoimmune disease. Treatments will follow.
    taniaaust1 and MishMash like this.
  3. Purple

    Purple Bundle of purpliness

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  4. Gemini

    Gemini Senior Member

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    I'm more interested in comparing ME/CFS to CVID, a well defined primary immune deficiency disease involving antibodies and for which there are treatments.

    Dr. Bansal states:"To date, defects in B-cell numbers or function have not been shown in the [ME/CFS] literature" which is unfortunately true. Over twenty years ago Drs. Klimas, Cheney, Komaroff and others observed B-cell abnormalities in patients, however in depth studies were never carried out. Interestingly some ME/CFS patients are given intravenous immunoglobulin therapy, a CVID treatment.

    I would rather see Dr. Bansal focus on severe CFS patients next and compare them to the moderates in this study.
  5. Overstressed

    Overstressed Senior Member

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    I think I had read somewhere that this might be related to an exhausted immune system, i.e. when numbers of T-cells, especially T-helper cells are low. I'm not sure though...

    Best wishes,
    OS.
  6. snowathlete

    snowathlete

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    You might be right but the study seems to focus on high proportions of certain B cells within the overall B cell population within a patient. So, in theory a patient with Low B cells could still have these same high proportions for these specific subsets of B cells.
    Valentijn likes this.
  7. user9876

    user9876 Senior Member

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    They seem to look at the life cycle of b-cells as this is where the abnormalities are. Given the 2/3rds sucess rate with Rituximab it may well be that there are multiple different possible thing happening.
  8. Marco

    Marco Old blackguard

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    I don't disagree that comparing ME/CFS and CVID or testing more severe patients would be desirable but they had these patients at the clinic and discarded them because they met certain 'psychiatric' criteria.

    Just to be clear these were ME/CFS patients with 'co-morbid' anxiety and depression. I fully appreciate the argument over strict and lax case definitions and how they impact on research but most if not all ME/CFS case definitions include anxiety and depression and the original Ramsey described ME talks about emotional lability.

    These are symptoms that I would fully expect to see as part and parcel of a neurological illness and not just as 'co-morbid' but unfortunately due to the all pervasive impact of the 'illness beliefs' school I believe we have been pushed in to denying these symptoms or into explaining them away as 'merely' a consequence of living with a chronic illness.

    I believe they are an integral part of ME/CFS and may be key to understanding the underlying pathology.

    Of course CVID is "a well defined primary immune deficiency disease involving antibodies and for which there are treatments."

    So are Anti-GABA Receptor Encephalitis and Stiff person syndrome as just two examples.


    Anti-GABA Receptor Encephalitis

    "Disrupted GABAB receptor signaling in rodents has been shown to result in seizures, memory dysfunction, anxiety, and alterations in mood. Consistent with these findings, patients with anti-GABAB receptor encephalitis present with prominent seizures, severe memory dysfunction, and confusion; some also experience perceptual disturbances, paranoia, and behavioral changes."

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086677/

    Stiff Person Syndrome

    The interesting this about stiff person syndrome, for which the pathology has been clearly demonstrated, is that anxiety and depression are explained by the treating physicians as resulting from living with a chronic illness that can cause sudden falls and injury. Transfer antibodies from an SPS patient into a mouse however and they display a high level of anxiety like behaviours.


    http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0016775
    justy likes this.
  9. Gemini

    Gemini Senior Member

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  10. August59

    August59 Daughters High School Graduation

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    This paper alone is convincing enough that we have amautoimmune condition or at the least a improper functioning immune system.

    We need Montoya's study completed along with Lipkin's CFI study completed ASAP to try to rule out any possible pathogens, so we can move on to why our immune system or maybe neuroimmune system since there appears to be problems in our brainstem area with misfolded amyloid-beta proteins(?) along with what else Dr. Bariniuk studies have have found. In addition Natelson and that groups study the found the numerous amount of proteins "specific" to CFS patient.

    These studies could sure answer a lot of questions. And, of course generate a lot of "new" questions. I keep hearing questions and answers I heard 5 years ago and I would sure like to know why. We have researchers going in all different directions and repeating previous findings. I often wonder why Montoya is doing his huge pathogen study when Lipkin and the CFI iniative seems to be similar enough to where they should be comparing notes on a weekly basis or possibly even combined.

    Dr. Barinuk is doing his spinal fluid thing and so is Natelson and his group. I bet you a dollar they are not sharing on e freaking bit of information. WHY????

    My rant for awhile!!
    MishMash and heapsreal like this.
  11. Gemini

    Gemini Senior Member

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    You make so many good points, August59! I find it interesting Lipkin (Sept 2012 press conference) noted "polyclonal B-cell reactivity" in current ME/CFS patients and those he studied in the 1990's, an "immune system" observation.

    On-going status reports on the studies you mention--Lipkin, CFI, Montoya, Barinuk, Natelson, etc.-- would be great!
  12. Ben Cook

    Ben Cook

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    It is with great sadness & regret that I have formed this opinion, but having seen the efforts and investments made both financial and otherwise over the last two decades in attempting to lobby the FDA or Global medical equivalents in taking CFS/CFIDS/Fibro/ME serioulsy, it doesn't appear that this banging our collective heads against the wall is paying any meaningful dividends.
    If anything its merely re-enforced an empirical disconnect, skepticism and clinical mistrust between those working at the coal face and living with this crippling illness, and those whose empirically dominant views define almost every level of CDC & FDA decision making.
    Thus I've formed the view that lobbying the FDA and equivalent continues to get us absolutely nowhere, and for all the cost and efforts involved, maybe we should instead consider focusing our attentions on lobbying those drug companies whose profit motive's and brilliant lobbying prowess is far greater than our own, and whose products can be re-patented for a whole new condition/disorder/illness.
    Its far easier for reputable (well connected and very influential) drug companies to seek approval for later stage trials of previously developed/approved drugs, not unlike Gabapentin conversion to Lyrica, and from a drug company's perspective; it would not be deemed prohibitively expensive for such open clinical trials to be initiated if it were made clear the number of patients and return on investmnet they may secure with comparitively little outlay to say a compound's creation in a lab up to FDA phase III-IV approval for market sale.
    So would it be prudent of us as a community to consider a slightly less glamurous option to achieve our objectives by actively lobbying those Drug companies whose products we identify as holding value and having them push our agenda as their own as it is clearly evident they have far greater reach and infleunce with the FDA and CDC ithan we do presently. Instead of preaching to the converted and wondering why we are getting no where, maybe we take a more realistic and pragmatic appraoch to how this game is played by wagging the dog to get access to the drugs we so desperately need and the indirect funding b others who will seek to capitalise on this newly emerging clinical market.
    Maybe the Gordon Gecko mantra, "Greed is Good" is a line of thought we should have to consider in an effort to achieve our very necessary objectives. Medicine is a business, no more no less and thus suspeciptible to the influence and opionions that money/lobbying can achieve. So it is in this context as horrible as it may sound, that I would be most interested to know exactly what medicienes from what drug comoanies that we seek an audience with. Then we initiate a common interest, shared lobby group who pitches to the decision makers in these companies what we want and the profit and benefits to them in fostering their organisations financial clout and interest in lobbying the FDA and CDC on their behalf and not ours.
    The minute we have a number of large drug compoanies picthing collectively their diverse drug offerings to the FDA & CDC the faster this condition will be accepted by our Insurance companies, physicians and society at large. It wasn't that long ago Parkinson's and Multiple Sclerosis were considered a neurosis not so differnet to the way CFS/CFIDS/ME/FIBRO is perceived today.
    I am advocating the establishmnet of a very professional CFS lobby group who in turn lobbies our targeted Drug companies whose drugs we feel hold the greatest value and wag the dog to get what we need until such time that other medical bodies follow suit and further interest from other resreachers and drug companies decide to join the party on the basis of profit alone.
    From my position honesty has got us no where, and I feel that we are holding our collective breaths for a Rituxmab miracle, one I cannot envisage occuring unless we are willing to play the grubby game of Big-Pharma Politics and invest in lobbying and marketing those whose opinions and decisions at the very top will determine the future of funding and grants fro research in this fielf of medicine, one that many are afraid to be associated with such is the bad name and connotations it esposues.
    I've no doubt what I am proposing is an unpopular approach, but I can't see much of an alternative at this point. Please let me know if this appraoch has been embraced and by whom, as it would appear that its only those practicioners who endeavour to treat this illness are the only one's that are our frontline bench working in combination with a commited voluntary estbalishment. In theory that is all fine and dandy, but its not how things i the real world of big busines work, especially big Pharma. If we do become a special interest group with a professional lobby group that represents our interests I suspect it may get us better results feven if it is a somehwat morally bankrupt approach to getting our needs met.
    Anyway that is my 2 cents worth and I'd love to think there was a better way than what I'm advocating we consider, but having watched from a far and donated money to this and that and seen very little progress I can't help but feel its time we too played the game and behaved like any other powerful special interest group in Washington. Its not like there aren't a few million of us in desperate need of access to better and more afforafbale treatments that what is currently on offer.
    Curious to know what others think about the greater CFS Global community creating a co-operative lobby council for lack of a better word, in an effort to have our voices and needs met just like any other special interest group that holds great sway over the FDA and CDC. If my views offend it is just frustration on my behalf and a genuine sense of being trapped and wondering if there may be a better way, unsavoury as it may sound?

    Take care all,

    Ben
    Waverunner likes this.
  13. DaiWelsh

    DaiWelsh

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    While I understand the frustration, IIUC replication is a key part of the scientific method, indeed lack of replication of some interesting results has arguably been a problem for us in the past. I have been lurking on another "bad" forum and there was an interesting post about how science funding is decided that I found quite eye opening as a lay person, unfortunately the thread was closed before I could ask for clarification.

    We are not (in the main) scientists but I think it behooves us to understand how science works in order to communicate effectively with scientists. If we complain about things that appear "wrong" from our perspective but are in fact part of the standard scientific approach then we are less likely to be given a fair hearing?

    Not intended to have a go at you btw, I do not know enough about how science works myself, just a thought.
  14. jimells

    jimells Senior Member

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    How did they know the mice were paranoid?? :rofl:
  15. jimells

    jimells Senior Member

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    Ben Cook

    Most folks Everyone here shares your frustration with the lack of progress and the callous disregard of our situation. I don't find anything particularly immoral with the idea of lobbying drug companies. But it seems to me that it would be as ineffective, or even the same as, directly lobbying FDA/CDC. I don't know how things are done in the UK and other places, but in the US it's a revolving door between 'public service' and 'private enterprise'. Today's agency directors are tomorrow's corporate directors. Federal agencies mostly do what industry tells them to do. Special interest groups' 'specialness' is directly related to the amount of money behind them.

    We are left standing outside a locked room banging on a sound-proof door. If we yell loud enough, they might throw us a few crumbs, appoint a couple of useless 'advisory' committees, pat us on the head, and tell us to go away before they call the cops.

    Corporations hate risk, and prefer to take 'popular' profitable drugs, even if they are essentially useless (like statins), combine them in some way that 'no one could have possibly ever thought off', and Voila! A 'new' patent. Who cares about a few million cranky patients when there are hundreds of millions waiting to buy the latest statin, antidepressant, or hypertension 'miracle drug'?

    So where does that leave us? Right here on this and other forums exchanging information on possible treatments we can explore today, and looking for ways to support the few researchers who really are trying to help us.
    MishMash likes this.
  16. MishMash

    MishMash *****

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    I have, literally, been hearing the same questions and answers since at least 1997. This business of HHV-6, reactivated viruses, anti-viral treatments, Ampligen, Kutapressin, this was all hashed over ad nauseum before the year 2000. It has not budged one inch. Meet the new boss, same as the old boss. We need new blood in the our researcher community. I know there are some ambitious, curious researchers looking for a good challenge.
    Waverunner likes this.
  17. August59

    August59 Daughters High School Graduation

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    Your first sentence is part of the icing on the cake. Nothing going on is in replication of anything else. It's almost as if they are trying out new technologies to examine the results.

    Montoya and Lipkin while looking for pathogens are not remotely close in the process of finding the end results. Montoya has been into his study for over 2 1/2 years. He also is supplying samples for Lipkins study
    , but my concern is the samples from 2 1/2 years ago. Montoya is serology only, while Lipkin is serology and some spinal fluid (I had some cancer laden tonsils I could have given them, but no one seem to give a shit about them). They were going to remove a very enlarged lymph node for use by a researcher. Again nothing, so they are going to destroy it with radiation instead of removing it. Lipkin is also using several new methods to look for whatever pathogens, which I I have no idea which ones.

    Barinuk and Nateleson are utilizing spinal fluid, but are looking for completely different causes, so no replication at all there.

    There are probably good studies out there, but we will probably have to wait 3 years so that it can be published. Meanwhile I'll probably be dead from cancer because I have to wait 5 more months to get on medicare and medicaid will not cover it because I have disability now.

    All of the researchers and doctors out there that don't think this disease kills. Someone has been blowing smoke up your ass!!
    Waverunner and DaiWelsh like this.
  18. DaiWelsh

    DaiWelsh

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    Really sorry to hear about your situation, I do feel the frustration of the slow progress as I am sure we all do, though not all in quite as stark a way as you :cry:
  19. Gemini

    Gemini Senior Member

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    What I find encouraging is Dr. Bansal is a new researcher to our community & B-cell research a new direction. Why did Lipkin chose to highlight B-cells in September given he's a pathogen hunter? Is it a coincidence rituximab is directed at B-cells & may be effective in a subset of patients? Maybe Cort could interview Lipkin & ask him these questions? For example are any of the Lipkin study blood samples going to be made available for B-cell research?

    I agree we need curious researchers to tell us why rituximab was effective in a ME/CFS subset. Roche continues to invest in this drug having just developed an injectable form. Over 3 million people have received the drug, 300,000 for diseases other than cancer. They've done over 300 clinical trials. So their in-house researchers & original Biogen discoverers with all of this data might be able to shed light on its mechanism of action in ME/CFS if they were educated about ME/CFS, were asked, and then were allowed by their legal department (i.e., proprietary information) to respond. Again maybe Cort could explore this and write an article?
  20. Waverunner

    Waverunner Senior Member

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    Most opinions here went into the same direction. I agree, that CFS research brought us next to nothing. A marker here, a marker there, some theory here, some theory there but no breakthroughs. We still don't know what CFS is and we still don't have any treatment for it.

    What will the future bring? We will get better and cheaper diagnostics and therefore we will get more data. Current tests for infections are expensive and some of them are not very reliable. In the future, breathing upon your bathroom mirror should give you more results, than any lab can give you today. Our present healthcare system is more like a healthcare management system. Patients get managed but individual treatment is not available because we lack the means for it.

    If CFS is caused by an infection, I guess it's not an obvious intruder. Maybe an unknown virus or an infection of the brain, where it is hard to look at. If CFS is an autoimmune disease, things are a bit more complicated, because we don't really know the cause of most autoimmune diseases and it's harder to treat them causative. But science will advance and sooner or later we will have our breakthroughs. The question is when.
    Jemal likes this.

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