1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
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.
Discuss the article on the Forums.

SBM: Kogelnik, Rituximab and CFS: Jumping the gun

Discussion in 'General ME/CFS News' started by Firestormm, Jan 13, 2013.

  1. orion

    orion Senior Member

    Messages:
    101
    Likes:
    64
    UK
    IVI, please spare me the fatuous links. I'm perfectly capable of looking up the dictionary definition of "engage" on my own, if I need to do so (which I don't). What I'd really like to know is what you mean by "engage" in the context of ME advocacy. But I suspect you already knew that.

    I note you've tried to muddy the waters between the scientific method (again the link is unnecessary) and medical ethics. That's a straw man. On no occasion have I said that I'm against the scientific method, and nor to the best of my knowledge, has anyone else in this thread. On the contrary, I'm a very strong supporter. Unfortunately, there are far too many doctors who pay lip service to the scientific method, but then blatantly ignore it when it doesn't suit their interests. If ME research was always undertaken in a rigidly scientific manner, then we wouldn't be in the mess we're in today.

    Medical ethics is an entirely different matter. There are certain aspects of medical ethics that I consider to be deeply obnoxious, and are, in my opinion, little more than thinly disguised self-interest. The prescription system is one such example. I believe in a free society. In particular, I strongly believe in the principle that people should be free to do whatever they want as long as their actions don't cause significant harm to others. People who choose to take prescription drugs against medical advice are obviously potentially putting their own health at risk. However, they are not doing significant harm to others. Therefore, there is no legitimate reason why mentally competent adults should not be allowed to purchase drugs (obviously at their own risk and expense) without the need for a doctor's prescription.

    There are also other aspects to medical ethics that I disagree with. But for the sake of brevity, I won't address them here.

    So to answer your question. Yes, it is most definitely in our interests to aggressively challenge certain aspects of traditional medical ethics (but not the scientific method).
    Roy S, alex3619 and Valentijn like this.
  2. satoshikasumi

    satoshikasumi Senior Member

    Messages:
    113
    Likes:
    122
    I will agree with you that there are few real "enemies" among scientists. Even the group led by the reviled Simon Wessley has done a good deal to advance the science of ME/CFS and he has had to change his positions significantly. This is not because he was "right" about anything, but because the slow accumulation of their own research results forced a series of admissions and changes (fatigue in CFS is not caused by simple deconditioning but may be caused by central sensitization and conditioned sickness behavior, CFS patients do not have an exercise phobia, CBT/GET is not curative but results in modest improvement).

    However, in the political sphere the concept of enemies is useful, and it is naive to think that agressive, hardball advocacy is never a useful strategy. It is already paying dividends in the UK, as the Medical Research Council last year funded biomedical CFS research for the first time.

    There are some bureaucrats, politicians, and insurance company leaders who want to cut funding for research, treatment, or sickness/welfare benefits for no other reason than cost. They want to reduce health care costs or the costs of providing benefits. For them, the concept of the "undeserving sick" is merely convenient.

    Saying CFS is "all in your head" or accusing patients of malingering is has the same function as using descriptions like "welfare queens", "the undeserving poor", and "people who don't want to work" for poor people who receive welfare or food stamps.

    In that case, the appropriate response is to get political, and use every ruthless tactic that works.
    MishMash, Valentijn and alex3619 like this.
  3. barbc56

    barbc56 Senior Member

    Messages:
    1,349
    Likes:
    717
    I think this quote from one of the comments in the SBM article compliments the above post.

    Barb
  4. user9876

    user9876 Senior Member

    Messages:
    707
    Likes:
    1,628
    I think we should be clear that the deconditioning and sickness belief theories were an integral part of the PACE trial and so in continuing to push those results (and hide other results) they are still pushing for those theories. I believe that the sickness behaviour theory is different - there is some animal research showing sickness behaviour can be induced by injecting certain immune cells. Hence it is a theory that the body is essentially being prepared to fight a disease and shutting non essential systems off and perhaps forgetting to turn them back on.

    Many of the papers I've read from White and Wessely have little scientific value. The reasoning is poor and they rely on poor mathematics and poor measurement systems. Scientists often go down blind allys but you hope that something would be recoverable. I can't see anything from their work. I've only read a small proportion of the work but what I have read is so poor I don't feel inclined to read more,
    WillowJ, Valentijn and alex3619 like this.
  5. satoshikasumi

    satoshikasumi Senior Member

    Messages:
    113
    Likes:
    122
    Some of White's stuff isn't too bad but it isn't well-developed enough. The role of the anterior insula as the brain's representation of the internal state of the body, "interoception". The idea that sickness behavior and pain can be classically conditioned through a sensitization process. Why CFS is often comorbid with other unexplained conditions. The question of time-contingent pacing versus symptom-contingent pacing in treating CFS.
  6. alex3619

    alex3619 Senior Member

    Messages:
    7,017
    Likes:
    10,792
    Logan, Queensland, Australia
    The scientific method applies to things that are objectively measurable. It is less applicable to waffle. That is why psychoanalysis was frequently called nonscience and pseudoscience. A lot of the CBT and GET research has the trappings of science, it superficially looks like science, but the application of the scientific method to this has failed. I think it can be done better. I think its time for a paradigm shift in the "soft" sciences, which to a large extent sociology has embraced but psychopsychiatry hasn't. I will have a lot more to say on this in time. One of the problems though is that this research is mostly being done by medical professionals and not dedicated researchers. This, in my view, can distort the process of science. Essentially the evidence of a lot of psychopsychiatry can be boiled down to one claim: Trust us, we are doctors.
    SOC and merylg like this.
  7. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,036
    Likes:
    8,390
    Amersfoort, Netherlands
    In the case of Simon Wessely at least, changes have been extremely minor. When it became obvious we don't have depression, the theory became atypical depression. After being involved in a study disproving that ME patients are biased against psychiatry, he still routinely condemns ME patient advocates and organizations as being anti-psychiatry. When physiological illness beliefs were disproven as being the sole cause of our continuing illness, he continued to insist that they are a contributing factor.

    So while he usually seems to accept it when his own work disproves his earlier baseless theories, he moves onto marginally different baseless theories and pretty much keeps on saying the same things. It might be "progress" but only in almost circular fashion (a spiral perhaps?) moving very slowly and reluctantly away from his original theories, and unlikely to ever stop revolving around his form of CBT as the One True Cure.
    MishMash and Roy S like this.
  8. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,965
    Cornwall England
    I've been pondering my concern about prescribing and as a patient being treated with Rituximab. I am I think most concerned with the notion that my B cells would be knocked out of kilter by this drug, when my entry into this diagnosis was a viral trigger, and subsequent relapses have resulted from further viral infections.

    I am concerned about this drug (further?) lowering my immunity, but I wonder, Rituximab doesn't prevent my body generating new B cells does it? I need to look into this aspect of the treatment I think. My concern is extended to those in our community who are fearful of having e.g. the flu vaccine and/or any vaccine, or for those whose immunity has not been bolstered by vaccination.

    What of the young? I mean my concern might not be reasonable I suppose. I simply don't know. But why take a drug, now, that will reduce my immunity further and (potentially) open me up to infections that could knock me for six? This is far more than a mere side effect. We are all used to taking drugs I suppose and reading the accompanying leaflets that contain warnings of these side effects.

    But what comes with a course of Rituximab when nobody knows what the side effects might be for someone with ME because nobody knows what ME is? So that's what I am most - I think - scared about. For what it's worth.

    Rituximab Information:

    Arthritis UK

    Was interesting to note that in Rheumatoid Arthritis the intraveneous infusion was given twice (on average) separated by two weeks. I am hearing that people with ME are having way more than two infusions and over many months. Also says that people with RA will likely feel better within 2-16 weeks and that a steroid might be needed prior to treatment. Wonder what the dosages are and how this has been calculated in people with ME? Quite an interesting lot of information from that website including confirmation of known side effects in RA.


    MedicineNet.com

    You see I do understand how in a certain type of cancer, this drug can work to destroy the cancer cells. In RA - in severe cases - and when other drugs have failed, it seems this drug can attach to B-cells destroy them and reduce the inflammation as a result. BUT the person is then operating with a much reduced immune response capacity - and how is that any good for even an assumed autoimmune condition if that is what we are saying ME is?

    Whether or not new B-cells are produced that are less likely to carry the inflammation associated with RA as a result of this temporary treatment - I don't know. Once you have had Rituximab do you need it for the rest of your life? What is it's duration?

    Is the theory that this B-cell inflammation (caused by we don't know what - genetic abnormality?) is similarly applicable in people with ME? Or rather some people with ME? Or that this drug is only effective in some people with ME but that other similar drugs might also be effective?

    Pre-treatment this site states

    I wonder what is administered, if anything, for people with ME prior to treatment with Rituximab and why?

    Interesting as it appears to be different to that from the website above. It implies treatment is more of a life-long experience. In people with ME I wonder if duration has been considered? Certainly hasn't been tested.

    Side effects:

    OK so you could say that the chance is slim, simple truth is though that we simply do not know in the case of ME. I mean there have been enough theories and studies floated and published about 'reactivated viral infections' over the years in relation to ME. So, what, we ignore all this previous patient-defended research in preference for a treatment that we don't know is either safe or applicable? Just seems too much of a risk for me personally, I am afraid, at this moment in time.

    And for those concerned with murine-triggers etc.:

    Wonder if they check it for [cough] XMRV? :) Sorry.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,141
    Likes:
    4,394
    australia (brisbane)
    my understanding is that b-cells regenerate, but i think that when the b-cells are knocked out that this stimulates other parts of the immune system like nk function, so maybe this provides protection and maybe the actual reason why ME patients improve on rituximab??
    I think one theory is that b-cells are a resevoir of infections like ebv etc so knocking these b cells might knock these infections?? So its not all about autoimmune issues?? WHy we need more research to work it out i guess, but its interesting.
    MishMash likes this.
  10. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,965
    Cornwall England
    Interesting indeed, Heaps. I edited my post I think after your reply. Some of the links might help your understanding also in respect of the points you make. Personally, my understanding doesn't extend to Nk function! :) But I think the reactivation (possibly) of latent viruses (in my edit) could cause concern to some folk in our wee commune.
    heapsreal likes this.
  11. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,036
    Likes:
    8,390
    Amersfoort, Netherlands
    Yes, I think active viruses are usually checked for first. Some viruses, like EBV, also infect B cells, so there is some theorizing that Rituximab might be knocking out infections hiding in those B cells.
    heapsreal likes this.
  12. user9876

    user9876 Senior Member

    Messages:
    707
    Likes:
    1,628
    They use Rituximab to remove EBV as it is reactivating to avoid post transplant lymphoma. This works very quickly as the b-cells are knocked out quickly and the EBV levels reduce. But patients there already have a very supressed immune system. So if they are b-cell carried pathagens then Rituximab will help control them.
    heapsreal and Valentijn like this.
  13. user9876

    user9876 Senior Member

    Messages:
    707
    Likes:
    1,628
    I believe it just kills of the current b-cells it doesn't affect the production capacity. There are ways of managing a suppressed immune system. For example, not going to crowded places, eating a clean diet. Given b-cells regenerate then I assume after an infusion there will be a window where they are low and I could see taking some sensible precausions might be sensible.

    The b cells don't directly cause the imflamation in RA. I believe that is caused by T cells. Theory is that the B cells call in the help of the T cells in appropriately (although I don't think that statement does justice to the complexity of the theory).
    WillowJ, SOC and heapsreal like this.
  14. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    I'm afraid you are making some wrong deductions. Like any organisation, no doubt the MRC is subject to internal politics - but it is certainly not within the 'political sphere' as that applies in any meaningful sense within the UK. One of the key elements in the achieveing a change in the MRC attitude to M.E/CFS has been the sustained dialogue that Charles Shepherd and others have had with the MRC management - a discussion that has been the absolute oposite of playing hardball and having enemies. In terms of the MRC, all the strident yelpings from other sources have been no more than 'noise off', although at times they have likely drifted from minor distraction to actual derailment.

    Of course whenever there is a victory, there are plenty of people who want to claim the credit - in the case of the MRC (such a victory as there may be) is solely down to Shepherd and those he has worked with, to suggest that other methodologies played a role is outright 'wrong'.

    IVI
    barbc56 likes this.
  15. satoshikasumi

    satoshikasumi Senior Member

    Messages:
    113
    Likes:
    122
    How do you know? This sentence is written like it is based on personal knowledge. As far as I know, there is no public record documenting exactly why the MRC did almost a 180-degree turn with regard to the proportion of physiological vs behavioral CFS research projects funded.

    The research world is somewhat insulated from the pressures of politics (by design) but there are many examples of external political influence altering scientific agendas.
    Valentijn likes this.
  16. satoshikasumi

    satoshikasumi Senior Member

    Messages:
    113
    Likes:
    122
    The strange thing is that Simon Wessley admits he hasn't actually done any CFS research for 10 years. His name sometimes appears on others' papers as a collaborator.

    Yet, he is usually the first spokesperson for the views of the UK government on the disease, and he is often quoted by newspapers to cast a critical light on new research. I see him as more of a public intellectual than an active researcher.
    Valentijn likes this.
  17. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    You don't need to invoke the notion of my having some insider knowledge - and frankly it's a bit frustrating to have to labour this point given that Google makes insiders of us all, not to mention that the MRC process and CS's involvement in it have been mentioned a number of times on these forums.

    MRC funds £1.6m research into CFS/ME

    MRC Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Expert Panel

    Understanding the Mechanisms of CFS/ME

    Working with the Medical Research Council

    Backing for ME research

    Look at the names on that second link and consider who was most likely making a case for the targetted approach that the MRC adopted.

    And examles of that would be interesting to consider, given that they are likely highly specific in terms of historical and cultural context. The fact of such political influence doesn't of itself tell us what nature of campaign or engagement was successful in affecting the political attitude - I suspect we are just back to the irrelevancy of comparing HIV in the US in the 1980s with the global position of M.E/CFS today. In any case claiming some distant or occult influence on an event whilst ignoring the very obvious has all the hallmarks of how Doomsday Cults' rationalise the failure of the world to end at an appointed time "It was our prayers that averted the comet/earthquake/giant planet eating aardvark etc".

    Where has Wessely ever acted as spokesperson for the UK Government ? Or even for some part the NHS other than the immediate service that Wessely has been part of ?

    IVI
  18. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    435
    Likes:
    424
    Illinois, USA
    I'm just copying that so I can find it by going back through my posts -- because I like it from someone who has just read a whole bunch of his papers. :)
    Valentijn likes this.
  19. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    611
    Likes:
    982
    Mercer Island Wa
    So Harriet Hall uses Katie's blog as an agenda piece for her organization without knowing too much concerning ME/CFS based on her comment about Katie's blog and on Dr. Kogelnik.

    Katie is a speiclaized chemo nurse who was working at a Cancer Insutitute. She has treated numerous patients with Rituxan and knows all about the issues and side effects from this drug. She has the qualifications to make an informed decision on the risks.

    Katie is also a long distance cyclist having cycled clear across Canada and back. She toured Europe and the Alps on her bike. She rode down to San Francisco and back just prior to coming done with this illness. You can imagine the stamina that would take. She was in peak physical condition. She was a Globe Trotter. Upon arriving back from a visit to Macchu Pichu, Peru she came down with a viral illness. A great majority of the ME/CFS patients are highly educated with high positions of responsibilities with no history of prior depressive disorders. This is not 'false illness beliefs'. This is something that you can't change by positive thinking that you don't have this illness as Hall alluded to in her comments. This is not a wastebasket disease that phyiscians put patients in because they ruled out other diagnoses. The Creed of physicians 'Do No Harm' equally is applicable to physician who refuse to carry out the necessary lab tests to determins if the patients does have an infectious disease. Doctors especially PCP will not authorized labs or panels to determine if there is an infectious diseases: what no panels for cytokine inflamation, no panels for anti-interleukin panels, immunoglobulin panels, no western blot, no panels for a bacterial or enterovirus infection, no Spect, MRI, PET, qEGG scans. Why? Cost and insurance companies refusal to authorize them as it cuts down on their profit margin. This is how you marginalize a whole patient community from receiving proper care from the very physicians that are supposed to help them. This is how you marginalize a patient community by grouping them with depressive disorder patients under the Oxford or Reeves Criteria. Let's not talk about the instant remission among slaves from mental illness called Drapetomani after the Emancipation Proclamation and other instant remissions from mental illness and disorders when science and technology found the organic and functional etiologies for the illness. How can physicians treat or administer powerful anti-depressive drugs without first knowing levels of serotonin, dopamine and norepinephrine, other than if it makes you feel better than I guess it is working. That's scientific?

    Hall should focus her attention on the pharmeutical industry who push pill after pill down people throats with Woo, Woo psychobabble diagnosis for ADHD.

    I work with a very prominent clinical psychologist and previous professor at the University of Rochester who made it her mission to contact physicians to tell them to stop drugging students with Ritalin because Big Pharma heavily marketed regular PCP with their drugs and were miss diagnosing students based on lack of clinical training and push by Big Pharma Sales Reps to get the drugs in the hands of PCP.

    Isn't it wonderful that Hall can focus on our obscure world of patients without focusing in on her own backyard of peddle pushing pharamecuitcal reps pushing pills down patients throats. Let's not talk about all expense paid junkets to tropical islands by key decision makering doctors, and lavish lunches/diners to doctors to push this brand of drugs over another. Let's not focus on the hundreds of patients who died and the tens of thousands of patients who are now incapacitated by an unsafe weight lost drug promoted by Mediator and are required to sue in order to recieve any type of compesation. Where Louis Servier, the 90-year-old head and founder of France's second biggest drugs company, which created Mediator, was placed under formal investigation on suspicion of manslaughter. A related trial to determine whether the Servier company misled patients and authorities about the drug. Less than a year before Mediator was withdrawn, he was awarded France's highest state honour, the Legion d'Honneur, by Nicolas Sarkozy – who once acted as his lawyer. http://www.guardian.co.uk/world/2013/jan/06/france-scandal-weight-loss-drug

    Let's now tell patients that generic drugs do not have the same potency as the brand name drugs and can use binders and fillers that can cause side effects that are absent from the brand drugs and most pharmacies sell the lost tier to gain great profit for the pharmacy while the efficacy of the medication maybe suspect. Ask a Pharmarist about the tier structure and why some patients fill symptoms being alleviated whereas other still have their symtoms.

    This agenda is very subtle to cast aspertions on the ME.CFS community. Dr. Kogelnik performs a comprehensive lab workup on each patient. As a former colleague of Dr. Montoya and his research, I am sure he is taking every precaution to fall within the ethical guidelines for off label treatment. He only selects a few patient that he feels would benefit based on the lab work and their history.

    Eco
    Edits still need to madel
    Jarod, Jemal, Blue and 1 other person like this.
  20. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    Are you saying that there is epidemiological evidence that working class/blue collar/poor/underclass people are less likely to be affected by M.E/CFS ? If so, what mechanisms for this social differential have been proposed ?

    IVI

See more popular forum discussions.

Share This Page