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NIH Letter Campaign

Discussion in 'Action Alerts and Advocacy' started by George, Oct 27, 2010.

  1. meadowlark

    meadowlark Senior Member

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    What a great letter.

    I do agree that "spirit" is the better choice. People enter the spirit of collaboration. On the other hand, a single person is "in the vein" (there's that famous line from Richard III, "I am not in the vein") because he is in an intractable mood. A person can also write something like "The president continued in this vein ... " but it implies someone with a single point, or (worse) someone with tunnel vision.

    Three tiny suggestions:

    (1) Perhaps "more productive dialogue" or "more effective dialogue" is clearer than "more earnest dialogue." But that is a personal choice for you.

    (2) "By encouraging doctors to run these tests where indicated, they come to understand the depth of the patient illness, thereby providing better quality care for that patient. In addition to this doctor/patient benefit there is the added benefit of grouping and sub-grouping patients more efficiently for later research purposes."

    The passive voice ("there is a cat crossing the street" rather than "a cat is crossing the street") usually diffuses the point a bit. I also think you've got a dangling participle (or something awfully close to one) in "By encouraging doctors to run these tests where indicated, they...." So this is what I would suggest:

    "Encouraging doctors to run these tests where indicated will help them understand the depth of the patient's illness and thereby create better quality care. And, in the process, patients will be more efficiently placed into groups and subgroups -- a significant benefit for research projects."

    (3) At the end, you have: "with a few simple changes to your website in a timely manner." Perhaps that could become "with a few simple, timely changes to your website."

    Wonderful stuff!

    Re the periods after ME/CFS .... I think there are different schools of thought on this. The way I learned it, in all matters outside the post office (which has, for instance, reduced American states to two-letter acronyms), a two-letter short form (D.P. for Director of Photography, U.K. for United Kingdom) requires periods, but three or more letters (USA, USSR, or AMPAS for Academy of Motion Picture Arts and Sciences) does not. Using that rule, M.E should have periods and CFS should not. I would argue, then, that when you have both acronyms joined by a slash mark, you have, in effect, a five letter acronym. No periods required.
  2. George

    George waitin' fer rabbits

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    I like that a lot and I'll incorporate that. Very nice meadowlark and thank you. Any help with the test's list????? Pretty please.
  3. meadowlark

    meadowlark Senior Member

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    Just this week, I have been trying to assemble a lucid, comprehensive list of tests to give my doctor, who knows nothing about ME/CFS. I have given her the entire Canadian Consensus document. Beyond that, my brain fog isn't helping. I've tried to assemble a list of tests but it's fragmentary, repetitious, and probably outdated. I will simply faint with joy -- I mean it! -- if someone posts here an up-to-date list that both doctors and patients understand.
  4. OverTheHills

    OverTheHills

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    Still feeling guilty that I cannot help this excellent thread along a bit more. So I will try to suggest how we evaluate which are the best tests to promote to doctors - some of this is dead obvious but thats all I've got..

    1. We need some that provide clinical evidence to support the diagnosis (as you have already pointed out Drs increasingly distrust symptom-only diagnosis and some confirmatory tests will build up the patients credibility in the Drs eyes and Doctors own confidence to act).

    2. Its no use suggesting research-only tests or tests that are very hard to source. I suspect this puts fatigue lab/repeat exercise testing down the list although it would be the thing that comes to my mind for confirming that central symptom of PEM

    3. Its good if some of the tests provide options for treatment - Drs, like everyone, love to feel they are acheiving something. So testing for POTS/OI is good because as well as being common in PWME it gives the Doctor something to do.

    4. Is there any reason why we can't cheat and ask a good doctor(or two) for their top 20? might take a bit longer but if we're going to ask for the moon lets get our spec right.

    Very much like the idea of categorising them. Helps everyone.

    OTH

    PS apparently 'petard' is French for 'fart' for anyoneone who is reading this thread closely.
  5. George

    George waitin' fer rabbits

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    You are absolutly right on all four counts and I think that prefacing the test list with those points (slightly diffrent wording) would be a wonderful addition. Who did you have in mind to ask for their top 20??? Does anyone have access to Dr. Peterson or Dr. Cheney. Those guys are way above my pay grade so any help would be appriciated.

    Wow this is going really well!
  6. OverTheHills

    OverTheHills

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    I've never seen a top doctor either:(.

    The first person who sprang to my mind was Dr Bell because I think he's got (at least an insight into) a real ordinary doctor mentality. A physician - physician not a physician-researcher. And thats who I think our target audience is. Although I'd love to see Dr Klimas myself, she's a Professor of Immunology isn't she? bit too specialist and leading edge perhaps. Although people speak highly of Dr Bateman for real detective differential diagnosis - which is important for tests.

    I think I'd pm Cort who may have contact details for the top docs from when he put together sections of this website. And then see who we can get to talk to us.

    OTH
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  8. illsince1977

    illsince1977 A shadow of my former self

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    The holidays are nearly upon us and after the holidays is a very dark time for our community.

    It's late and this great letter deserves more careful attention than I can give it now, but at first glance I noticed the above in the last pragraph. My addition in red.

  9. voner

    voner Senior Member

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    ////////////////

    George:

    WOOF! WOOOF!

    Quite an excellent response also. I thought -- well here's something I can help out with -- editing. I'm good at editing for clarity and purpose etc but the editing responses to your letter have been just excellent.

    I also highly suggest a PM to Cort and see if you can get a list from Dr. Bell, Dr. Peterson, or Dr. Bateman etc or maybe Cort knows of existing lists...

    However! I advise caution in this list of tests. Many of us patients are on extremely limited incomes, and some doctors just love to test -- but the tests don't do us any good or tell us anything i.e. you get a test that is positive or indicated something is wrong in some area -- but there is no effective treatment protocol -- where do we end up? Money spent and no progress

    At the recent meeting in Colorado Dr. Suzanne Vernon stated that the Vo2 max exercise test was definitive. So did Dr. Nancy Klimas at the recent CFSAC mtg. I noticed that Dr. Peterson uses it also as a definitive test. Patients seem to hate it -- understandably so - it induces postexercise malaise, but it's definitive and striking!! For the last couple years, have I have worked with a physical therapist - to keep myofascial myofascial pain/trigger point/fibromyalgia type pain moderated a bit - and I go back and forth with my PT on exercise regimes and on all sorts of other items concerning my body -- and until I mentioned the V02 max exercise test results from ME/CFS patients, the lights never went on inside his head but the VO2 max exercise test -- all of a sudden he understood the severity of the illness. Quite striking!

    Dr. Nancy Klimas stated, as did Dr. Vernon in Colorado, that the NK cell test is a definitive test -- however it is a very difficult task for the labs to perform accurately thus at this stage it is not a test to recommend the doctors. unless you can recommend the exact lab that it should be sent to as I know Dr. Klimas and Peterson uses test. I think Dr. Vernon said that Dr. Klimas first published the NK cell anomalies of and me/CFS patients in 1993! However, it's still a difficult test for the labs -- that's pretty darn expensive them sure and possibly not all that accurate ??

    I now also remember that Dr. Vernon expressed that one of the frustrations that she had, and she wanted to change, was that even some of the definitive tests that could be performed are not standardized. the tilt test is done differently by different doctors -- and it matters in the results you get, etc.

    I don't know -- it sure seems to me that if I was writing the letter, which I'm not -- and you're sure welcome to ignore everything I say here -- as it's you that is taking the initiative to write this letter, etc. - I might emphasize recommending the clinical doctors do a test or two that shows how truly impaired the patient is what sticks in my mind is the wonderful quote that the Phoenix Rising member, ahimsa, has as a signature:


    It might look like I'm doing nothing ... but on a cellular level I'm really quite busy

    and and then from there? ......

    I guess I'm a believer that the first test should be something to prove the severity of the illness -- and then testing from then on should be trying to delineate treatable symptoms -- which is probably a different protocol for each individual at this point, until something more definitive like biomarkers for subgroups or HMRV/XMRV pans out..


    Respectfully and humbly submitted.

    And another . WOOF! WOOOF! For your efforts!!
  10. mezombie

    mezombie Senior Member

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    Hi George,

    I appreciate the intent behind this letter.

    However, the above two requests are ones that NIH can't do anything about. That's because it is the CDC, not NIH, that is in charge of providing information to treating doctors.

    NIH is only concerned with research, so everything is geared toward that -- doing research, and getting outside researchers involved.


    NIH and CDC: It's like dealing with two corporations that have different products. Asking one to change the other's product isn't really going to work.

    As to the website, Mangan is working with NIH's IT people to change that. He really is aware of the need for the changes that you've mentioned.

    The ME/CFS program is in ORWH (Office of Research on Women's Health) not because ME/CFS is seen as a woman's disease, but OWRH is part of Director of NIH Collins's domain. It also allows for more flexibility, more inter-mural research.

    Having the ME/CFS program in ORWH keeps it out of the paws of people who historically have not been our friends, such as NIAID (National Institute for Allergies and Infectious Diseases) Director Tony Fauci.

    Instead, people like NIH Director Collins, who has reached out not only to us but has also asked NIH researchers like NCI's Le Grice what he's doing about ME/CFS are who Mangan reports to. In between Mangan and Collins is Anderson, new to NIH but also interested and sympathetic.

    Of course we need to see what these people are going to do. But seriously, some of what you are asking Mangan to do is exactly what he is doing. And the rest he cannot act on because it is a CDC matter.

    Like everyone else, I am watching and waiting. If Mangan doesn't follow through, I'll be among the first to make sure he gets the message of displeasure.

    Keep in mind that CFSAC ended two weeks ago. Mangan has been on the job (head of the ME/CFS program) for just those two weeks. And he's part of a huge bureaucracy.
  11. glenp

    glenp "and this too shall pass"

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    Woof Woof

    Awesome!!

    May I add "poor man's tilt test" its soooooo easy and often shows the doctor immediately that you have something wrong. I have a gut feeling that doctors performing the poor mans tilt test on many of his "chronic complainer " patients, might just give it some more thought. I don't imagine it would be suggested to leave a patient standing by themselves - but it should somehow be considered - even if a doctor sees a few patients in the meantime - and then comes back to his standing patient for retaking pressure and pulse. Its cheap and will show the doctor immediately.

    God bless you all - and I thank you all for what you are doing for us

    glen
  12. Chris

    Chris Senior Member

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    George--great idea and letter--but I don't know where it stands after Mezombie's critique--don't know the bureacratic structure well enough to comment. But if you are still looking for tests, don't forget Cheney's two favourites--echocardiogram, focusing on the IVRT (isovolumetric relaxation interval, I think), to provide evidence of diastolic dysfunction, and also impedance cardiography (a.k.a. plethysmography), a non-invasive and not too technical test that should provide evidence of low cardiac output, closely associated with our Orthostatic Intolerance and other symptoms.
    I would also second Nancy Klimas' latest research on cytokine profiles, particularly IL-8 and 12, if I remember correctly. I know that measuring NK cytotoxicity is tricky and expensive, though apparently very diagnostic. Best, Chris
  13. George

    George waitin' fer rabbits

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    I want to thank Chris for those excellent suggestions!

    I want to point out that the NIH CFS website is down now and under construction. Now is a great time to send in your recommendations. Please feel free to use the letter on the front page in it's entirety if you want. I'm just really excited that they are starting the restructuring this soon! Note the new name. (pretty, so pretty)

    A big thank you to Mezombie for pointing out the limitations that the NIH has been working under. I really believe that the NIH is not only willing but able to do an end run around the CDC. Dennis Mangan indicated (my dog brain interpretation here only so take it with a shot of drool) that they would be redesigning and re-coding the illness to ME and making recommendations on their new site. It makes sense if you think about it. If the CDC refuses to change their site and there is a major public health problem then the government could get into a lot of trouble if everybody drops the ball. So I believe, hope, have faith in the NIH to do the right thing here. If for no other reason so that their butts are covered. (big grins)

    If anybody wants the tweeked letter I'll post it on the first page. And thank you all for your support.

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