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Here we go round the Merry-go-round. Part Two

Blog entry posted by alex3619, Aug 12, 2012.

And the Cycle Continues

At some point in the middle to late twentieth century (possibly 1982) it was discovered that vitamin B12 injections could treat ME but it was not curative. Many doctors know that and use it clinically, but it is only recently that serious research has been conducted on this, a story we know well on Phoenix Rising. Vitamin B12 is only one of a range of nutrients that have been implicated in ME and CFS. It is interesting that most seem to tie into either antioxidant mechanisms or antioxidant support mechanisms.

Lerner has shown that CFS and ME patients with high viral load can be successfully treated with antivirals, though the treatment required is still considered experimental. Yet the success is an order of magnitude better than anything achieved by CBT or GET. The science behind this proceeds slowly and may one day give us definitive treatments, but its being ignored in some parts of the world by some who prefer a psychogenic explanation. History is repeating itself.

Research by Peckerman, Pacific Labs and Alan and Kathleen Light have shown that there are physiological abnormalities that make inappropriate exercise therapy somewhere between problematic and dangerous. Yet graded exercise is still a favourite therapy amongst some psychiatrists.

Current biomedical research is also focussed heavily on several types of immune dysfunction. While much of this is focussed on the innate immune system including Natural Killer cells, some of it is also looking at the adaptive immune system including B and T cells. I have hopes that major breakthroughs will be made soon. In particular the drug Rituximab is showing great promise though phase 3 trials have yet to be completed.

One thing that seems to be totally ignored by those promoting the Dysfunctional Belief model is that serum levels of lipopolysaccharide in CFS appear to correlate with illness severity. My guess is they are hoping that findings like this will just go away.

Karl Popper and others have called psychoanalysis non-science and pseudoscience for good reasons, although there is no universal agreement on those reasons. The modern variants are simply Freudian thinking with cognitive and behavioural issues emphasized instead of emotional ones, I point I hope to return to in a later blog.

Just in case there is any doubt, I am well aware that Popper's claims have been disputed, as have those of Kuhn. Kuhn himself refutes Popper's claim about pseudoscience and psychoanalysis, but notes they both came to the same conclusion. Detailed discussions of this I will leave for my book unless there is a lot of interest.

The idea that CFS is due to a Dysfunctional Belief System is far beyond the evidence supporting it, and in direct contradiction with the bulk of the biomedical evidence. When will the bulk of the medical profession recognize this? At some point I will be writing a series of blogs on this issue.

The book Skewed by Martin J Walker presents a similar view, but with application to so-called functional syndromes including MCS, GWS, CFS and ME. I may review this book soon, in a blog called Greenwashing.


References

Christie D. A., Tansey E. M. (eds) Peptic Ulcer: Rise and Fall, Wellcome
Witnesses to Twentieth Century Medicine, vol. 14. London: Wellcome Trust Centre
for the History of Medicine at UCL, 2002.
http://www.history.qmul.ac.uk/research/modbiomed/Publications/wit_vols/44836.pdf

Fluge, Ø. & Mella, O., Clinical impact of B-cell depletion with the anti-CD20 antibody Rituximab in chronic fatigue syndrome: a preliminary case series.
http://www.jautoimdis.com/imedia/9930070027668241_manuscript.pdf

Lerner, A., et. al., Subset-directed antiviral treatment of 142 herpesvirus patients with chronic fatigue syndrome, Virus Adaptation and Treatment, 24 May 2010
http://www.co-cure.org/Lerner.pdf

Light, A.R., et. al., Moderate Exercise Increases Expression for Sensory, Adrenergic, and Immune Genes in Chronic Fatigue Syndrome Patients But Not in Normal Subjects, The Journal of Pain, Volume 10, Issue 10 , Pages 1099-1112, October 2009
http://www.jpain.org/article/S1526-5900(09)00574-4/abstract

Pacific Fatigue Lab, Hope for the Weary.
http://www.pacific.edu/About-Pacific/Newsroom/2012/February-2012/PFL-Feature.html

Maes M., Mihaylova I., Leunis J.C., Increased serum IgA and IgM against LPS of
enterobacteria in chronic fatigue syndrome (CFS): indication for the involvement of gram-negative enterobacteria in the etiology of CFS and for the presence of an increased gut-intestinal permeability. J Affect Disord. 2007 Apr;99(1-3):237-40
http://www.ediver.be/ediver/latest news/Leaky Gut, CFS, Maes M.pdf

Maes, M. & Leunis, J.C., Normalization of leaky gut in chronic fatigue syndrome (CFS) is accompanied by a clinical improvement: effects of age, duration of illness and the translocation of LPS from gram-negative bacteria., Neuro Endocrinol Lett. 2008 Dec;29(6):902-10.
http://ediver.be/ediver/latest news/Leaky gut in CFS, treatment of leaky gut.pdf

Overton, S., Charcot's Bad Idea, www.simonoverton.co.uk, 2009

Peckerman, A., et. al., Abnormal Impedance Cardiography Predicts Symptom Severity in Chronic Fatigue Syndrome, Am J Med Sci 2003; 326(2): 55-60.
http://cfids.best.vwh.net/MESA/Peckerman.pdf

Walker, M.J., Skewed, Slingshot Publications, 2003.

Webster, R., Why Freud Was Wrong, Harper-Collins, 1995

White, P., Biopsychosocial Medicine, Oxford University Press, 2005

Other web links:

http://en.wikipedia.org/wiki/Pseudoscience
http://en.wikipedia.org/wiki/Jean-Martin_Charcot
http://www.news-medical.net/health/Peptic-Ulcer-History.aspx
http://en.wikipedia.org/wiki/Here_We_Go_Round_the_Mulberry_Bush
http://en.wikipedia.org/wiki/Timeline_of_peptic_ulcer_disease_and_Helicobacter_pylori
NK17, biophile, justinreilly and 11 others like this.
alex3619

About the Author

I am a long term ME patient with many complications. While I have pushed research advocacy since 1993, I became political around 2009. My current project is a book called "Embracing Uncertainty". Uncertainty in medical science seems anathema to too many doctors. "I do not know" is something more doctors should be honest about.
  1. alex3619
    Hi Enid, to me mind is a description of brain phenomena. It gets caught up with language and consciousness, so they infer mind as an hypothetical explanation. To me, "mind" is a model, not a reality. Its a simplification. Hence mental diseases are a simplification of a very complex reality. They are really brain diseases.

    The real worry in the USA and around the world will be after DSM-V comes out. It CSSD and similar are allowed to stand, any psych, any doctor can label anyone with a psychiatric disorder based on symptoms sets. That includes, by the definition, anyone with ME or CFS. Insurance companies may love it.

    Fortunately there is a lot of opposition to DSM-V from within the medical profession and from psychology. With any luck DSM-V will be a financial flop, or forced to have sections retracted or massively rewritten - but I am not counting on that.

    Bye, Alex
    warriorseekspeace likes this.
  2. Enid
    I think what's really scary alex is that someone does (and has the freedom to do so being in protected world of medicine) - sit in all seriousness opposite one and say "its all in your mind". OK so it was ten years ago but it was perfectly obvious from my physical difficulties something was physically wrong. Not only dangerous for such a suggestion (I had to confirm with my GP I wasn't going bonkers) but the devestating realisation that we are living in the UK in the 21st century and "mind control" exists. Keep up your good work alex. (Incidently I have complications too inevitably). Philosophers you quote missing something fundamental - what's mind - any definition - suggest they turn to science. Profound issues indeed.
  3. alex3619
    (started in previous post)

    These are not frustrations. These are profound issues in science and medicine, with decades of evidence. If you haven't read Oslers Web, if you have never heard of Magical Medicine, if you are not aware of the misleading claims arising out of the PACE trial, which started to happen about March last year, you will not understand where I am coming from. Furthermore I am writing a book on this, and already have hundreds of pages of material ... and two books have already been published on this. Psychobabble is from Freud primarily in my view, and leading philosophers of science in the last century have called Freudian psychoanalysis non-science and pseudoscience. The rules that most other scientific research use to ensure good science are not practiced under these approaches.

    Please read all of my previous blogs plus ME Analysis if you do not understand this.

    In the UK children are being taken from their parents and forced into exercise. Don't kid yoruself - it happens in the USA too, as well as here in Australia. They typically get worse, and are typically traumatized.

    Many patients with ME or similar in the UK live in fear, and for good reason. They can crash through your door and take you or your child under the mental health act. If you get worse or die there is no redress. You cannot sue.

    Bye, Alex
    warriorseekspeace and Enid like this.
  4. alex3619
    Hi SanDiego#1, there are places in the world, especially the UK, where there is almost no other diagnosis than mental. It doesn't exist according to the authorities and is not accepted. This is sometimes disguised by the rhetoric they use.

    Many patients with a CFS diagnosis and perhaps nearly all with an ME diagnosis have objectively verifiable damage from exercise beyond their aerobic threshold. There are also limitations to cardiac function. This does not mean we cannot exercise, it means we cannot do graded exercise and cannot do exercise beyond our threshold. That threshold can also plummet if we overdo things. People have died as a result of exercise. Many more have become totally disabled. I went from a mild patient to a severe patient largely as a result of exercise.

    The psychiatric domination of the research for decades has diverted much of the research funding, and probably limited it too. As a result it may take years or decades more to get a cure. Indeed, we may have had an effective drug treatment for most patients for twenty years now, and it might have been about to go generic - Ampligen. If you wonder why you have no cure, look no further.

    (finished in next post)
    warriorseekspeace likes this.
  5. SanDiego#1
    Alex- I understand your frustrations. However, I have had CFS, CMV, EBV and now Diostoclic dysfunction. I have NEVER had a physician CFS or Conventional diagnose me with Mental issues, even though I am sure I probably displayed them when I was in a downward spiral. B-12 injections and Immune Globulin inj have saved my life. I AM SURE. HOWEVER I am not even sure now I am going to have anymore blood tests to REEVALUATE MY CONDITION. NO ONE KNOWS ANYMORE TO ME THAN THEY DID 20 YEARS AGO. EVERYONE IS GUESSING EVEN THE BIG CFS PHYSICIANS .RESEARCH, TESTING, TESTING, MORE TESTING. WHEN THEY HAVE SOMETHING CONCRETE I MAY GO WITH IT.ANOTHER CONTENTION OF MINE IS-I HAVE ALWAYS CONTINUED TO EXERCISE, ALWAYS ON DIFFERENT LEVELS, BUT HAVE NEVER STOPPED. THIS TO ME IS A BIG MISCONCEPTION THAT IT HURTS YOU WHEN YOU HAVE THESE DISEASE. YOU BECOME MORE ILL BY FEELING LIKE YOU HAVE TO GIVE UP EVERYTHING. YOU DO BECOME DECONDITIONED!!!!!!!!
  6. SanDiego#1
    Alex- I understand your frustrations. However, I have had CFS, CMV, EBV and now Diostoclic dysfunction. I have NEVER had a physician CFS or Conventional diagnose me with Mental issues, even though I am sure I probably displayed them when I was in a downward spiral. B-12 injections and Immune Globulin inj have saved my life. I AM SURE. HOWEVER I am not even sure now I am going to have anymore blood tests to REEVALUATE MY CONDITION. NO ONE KNOWS ANYMORE TO ME THAN THEY DID 20 YEARS AGO. EVERYONE IS GUESSING EVEN THE BIG CFS PHYSICIANS .RESEARCH, TESTING, TESTING, MORE TESTING. WHEN THEY HAVE SOMETHING CONCRETE I MAY GO WITH IT.ANOTHER CONTENTION OF MINE IS-I HAVE ALWAYS CONTINUED TO EXERCISE, ALWAYS ON DIFFERENT LEVELS, BUT HAVE NEVER STOPPED. THIS TO ME IS A BIG MISCONCEPTION THAT IT HURTS YOU WHEN YOU HAVE THESE DISEASE. YOU BECOME MORE ILL BY FEELING LIKE YOU HAVE TO GIVE UP EVERYTHING. YOU DO BECOME DECONDITIONED!!!!!!!!
  7. Esther12
    Ta Alex. I'm still rather sceptical about the value of things like B12 and Lerner's antiviral stuff. Even if there were no effective treatment though, I don't think that would do anything to justify the psychosocial approach taken to CFS.
  8. warriorseekspeace
    OK, Alex, I will post links to, or quotes from your blogs next time I wish I could put an intelligent comment at the end of something I see. But give you the credit, of course.
  9. alex3619
    Thanks WaSP! WaSP, one of the reasons for writing blogs is so that others can post links to them if they feel they are appropriate. That goes for other blogs too. There are several bloggers not on PR who I pay attention to. There is a lot of good stuff out there.

    user9876, I completely agree with your points. There are so many multifactorial layers of problems in their research that I am spending years (OK only months so far) teasing them all out. A large section of one chapter in my book is essentially psychobabble as pseudoscience. The current article fits with chapter 4, which is on historical views toward psychosomatic medicine and ME. I am now aware of something like four or five other people writing articles or books dealing with non-scientific psychosomatic medicine, though I suspect our focus varies. There is so much information on how this unfolded, though its not always easy to find. Methodological problems are at the heart of the whole thing. Currently I put the primary instigator of those problems as Freud.

    One of the reasons I am writing these blogs (there is actually a long list of reasons) is for feedback. Many minds work better than one, and alternative views give me extra things to consider. So in a way you are all participating in the background material for my book. Thank you.
    warriorseekspeace likes this.
  10. warriorseekspeace
    I'd like to see you post this and similar of your comments, directly following the publication of these pseudo-studies, so anyone who is getting misinformed by reading the "research," would also have at least the chance of getting some proper information, or at least thinking critically about what they just read.
    Alex, I just love the way you think! I also love the way you communicate your thoughts.
    WaSP