Monday, March 21, 2011

Biological Causes by Amy Dockser Marcus


No sooner do I finish considering one article by Amy Dockser Marcus than she has published another one. This journalist is really pushing the ME/CFS story along. This time the article seems to me to be much more focussed and readable. Personally I like seeing the name of Dr. Jose Montoya and that of the Utah group, two of the relentless researchers in this illness. Serious information is presented here, leaning on the various approaches scientists are taking. Particularly helpful is the effort from many directions to find an infectious agent - which many people have known is there, and for many years now. It is about time for a serious effort to identify the agent or agents. The character of the illness points to a retroviral involvement. Noteworthy amongst them is XMRV and its family of retroviruses. Dr. Montoya will consider other pathogens -HHV6, EBV - until they lead him to something else. He is open to suggestion, and it is just a matter of time. He is a terrific clinician/researcher.

Amy Marcus was a little weak on the disease definitions, leaving out a very important piece -the Canadian Consensus Criteria. When this is applied, the diagnoses is not vague or mysterious. When this is applied many negative XMRV studies would not exist. She also leaves out the development of cytokine/NK cell panels that clearly determine a pattern of profoundly dysfunctional immune systems in these patients. At least three different places are working on these arrays. I think it is also important to emphasize that people can get better - but they do not "get well". Personally I never could understand this "waxing and waning" idea, as it is like many illness - they cycle. This "symptom" is not helpful in characterizing these patients.

Personally I look for these articles to be "useful" to me and my daughter - and I deem this one to be so. What this means to me is that I can send it out to everyone that I know, knowing that it will add in a mostly positive way to their growing involvement with this illness. Some months ago I decided that I was tired of people dropping me off their schedules (as if I were dead) and not being able to understand or seemingly be interested in what my daughter is going through. Dropping the anger, I decided to contact everyone I know - family and friends - and give them the "short skinny" on ME/CFS - and, perhaps most importantly, to set them up for future information, as this disease drama unfolds. Incidentally I also used this "educational" effort to solicit modest gifts (for the Whittemore Peterson Institute) from family and friends, about 100 people so far. The results have been surprising, and I will write about them soon.

7 comments:

  1. Excellent points here. I liked the article too. The ideas of waxing and waning and especially the 'hard to diagnose' and 'vague symptoms' memes are propagated by the usual criminals to wrongly imply psychogenesis. CCC needs to be immediately adopted by all.

    Thank you so much for educating so effectively that you have solicited gifts from 100 people!! That is absolutely incredible! Can you share more of what you did. I think this would be helpful to all of us who wish to follow in your footsteps.

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  2. Thank you to your son for the amazing videos he has produced for WPI!! I am sure they will facilitate a lot of giving.

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  3. The "waxing/waning" is not without meaning.

    If one could only discern the mystery behind this phenomenon, it might be possible to control it.
    Perhaps even block it before it strikes.

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  4. Yes, Chris, it was surprising to see another article so soon from Ms Dockser-Marcus. This is another fairly good one, with the weaknesses that you described. Maybe those issues will be addressed in the next article she writes. I am sure the responses (over 200) to her are fueling the continuing coverage.

    I, too, am looking forward to hearing about how you approached your family and friends and got them involved and donating!

    Thanks for the continuing coverage and critiques; they help me so much!

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  5. Mrs Docker Marcus has dropped the big green X from her blog

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  6. I always look forward to your posts Chris and consider you one of our very finest advocates for those of us who have declined beyond being effective advocates for ourselves. Your clarity of mind makes me so l-o-n-g for mine. Blessings to you and your family - and thank you!

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  7. Who is pushing an ME/CFS story? Patients with ME want an ME story, and ME research. Patients with ME should not be diagnosed with CFS. If you are a CFS patient advocate and have CFS, then by all means.... But the ever shifting semantics, meanings, combinations, begin to mean nothing. Or mean what we think they mean but, does not translate in the real world. Within the same article it will flip back and forth or the title won't match - from CFS research to ME/CFS patients to ME ..... But we still wring our hands and lament and wonder whyohwhy people do not understand or take it seriously?

    Patients with ME do not need CFS included or the ME/CFS or the Canadian intermediate. It is just more confusion and helps no one.

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