1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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Hillary's newest blog post is something everyone needs to read!

Discussion in 'General ME/CFS News' started by Luciebee, Nov 2, 2009.

  1. starryeyes

    starryeyes Senior Member

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    Right On!

    I got so fired up just now after finally being able to watch the Senior Advisor for Blood Policy address the CFSAC that I just wrote both of my Senators and my Congressman and I covered all of the topics you mentioned and I told them all that the WPI is on Capitol Hill right now until Oct. 9.

    I just started a thread about the Blood Supply and Organ Donations in the General CFS section too. I am wound up Baby!!
  2. Hysterical Woman

    Hysterical Woman Senior Member

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    Woo-Hoo!!

    Go teejkay Go! If enough people do this, the government can't help but take notice.

    Did you mean Nov. 9?

    Thanks for your efforts! It can benefit all of us.

    Maxine
  3. Samuel

    Samuel Bedbound with NO DOCTOR

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    I think it is important to make sure that documents do not get destroyed.

    This seems a good time to do things like make local copies of things on the web, cultivate witnesses, make FOIA requests, subpoena documents, etc. Also, keep offline backups of everything.

    If we can anticipate the next moves of the denialists, we might get documents first.
  4. starryeyes

    starryeyes Senior Member

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    Oh no... I wrote Oct. 9 in the letters-- brainfog! :cool:
  5. Hysterical Woman

    Hysterical Woman Senior Member

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    Not the end of the world

    Hi teejkay,

    Not the end of the world, and an indication that you struggle with your illness. The bottom line is that you did something positive for yourself and all of those out here who are desperately hoping for some recognition that will lead to testing for all and then treatments.

    Take care,

    Maxine
  6. starryeyes

    starryeyes Senior Member

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    Thanks Maxine. I needed to hear that today. :)

    I am very curious to find out what the WPI did at Capitol Hill. Anyone know?
  7. Hysterical Woman

    Hysterical Woman Senior Member

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    No problem, teejkay


    Hi teejkay,

    I am sorry to hear that you needed to hear something positive today, sounds like you are having a rough time. Hang in there!

    I haven't seen anything posted yet regarding what WPI did at Capitol Hill. Many are anxiously awaiting to see if anything gets posted.

    Take care,

    Maxine
  8. Hysterical Woman

    Hysterical Woman Senior Member

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  9. Katie

    Katie Guest

  10. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi Katie,

    I saw your post in the XMRV section after I posted this - thanks for your very quick actions! Like many of us, I have been trolling to find new information regarding XMRV, and hoping that the world will continue to take notice. And although this new discovery is more "robust" than others we have seen in the past, many of us just can't shake the worry that we will somehow be burned again.

    Thanks again for your quick actions.

    Take care,

    Maxine
  11. Koan

    Koan Be the change.

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    From

    http://www.cleveland.com/healthfit/i...t_at_clev.html

    "In October, a team of researchers from the Clinic, the University of Nevada at Reno and the National Cancer Institute reported finding the virus in the majority of patients they studied who had chronic fatigue syndrome. CFS is a debilitating disorder marked by profound fatigue, muscle pain, impaired memory and other symptoms. Its causes are unknown."

    This is the best possible way CFS can be described when in reporting: strongly worded, clear, unequivocal and without editorializing. The more simple, clear statements like this are out there describing this condition, the better.

    I was also thinking that The Cleveland Clinic is probably well positioned now to become a centre of treatment given its familiarity with the research. The amount of interest in "CFS" has just gone through the proverbial roof and having Cleveland Clinic linked to the report and the reporting presents them with an opportunity to get involved early which could only be good for an institution in an area hard it by the economy. And, of course, good for the "CFS" community.

    We have come a long, long way in such a short time.

    koan
  12. Jerry S

    Jerry S Senior Member

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    Thanks for your insights, Koan.

    Jerry
  13. starryeyes

    starryeyes Senior Member

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    Thanks for posting that link and drawing my attention to it Maxine. This is very good for us. :)
  14. anne

    anne Guest

    It would be nice if the Cleveland Clinic stepped it up. As you'll see from their website they're not so good with it now. They've actually edited that description in the past couple of months--they used to explicitly say they search for "underlying mood disorders" and they've added something about checking immune systems--though certainly not treating it. My husband was basically tuned away from the ID doctor there. Someone on the CFIDS website reports they went and was told by the CFS specialist that there wasn't any such thing as CFS.
  15. starryeyes

    starryeyes Senior Member

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    Gee Anne, that's important for us to know. Here are some snippets from their site:
    Hmmmm.... "reliable sources?"

    I have to say that when I read the rest of the page I don't get the feeling at least, that they think there is no such thing as CFS. What's strange about that patient's report too is that it was The CFS Specialist there who said there is no such thing as CFS. That doesn't make sense.

    What's ID? Intelligent Design? ;)

    It does seem that they think they can successfully treat CFS by "aggressively" using exercise and Spirtuality. Whatever! Most likely they had success with PWC who were going into remission anyway.

    The Cleveland Clinic has a button to send Feedback:

    https://my.clevelandclinic.org/webcontact/webmail.aspx

    For "Area within Cleveland Clinic you would like to contact:" I put "Infectious Disease" since they did not have CFS listed. I wrote and gave them a piece of my mind.
  16. anne

    anne Guest

    In this case it might as wel have been intelligent design, but its infectious diseases. She just told him that they didn't treat EBV and seemed very bewildered as to why he'd expect they would.

    As for "quest for wellness," there was a time my quest was more like being able to walk to the bathroom.


    Here's more:

  17. George

    George Guest

    I suppose that might work. If I brake my arm. . . and I eat right, don't stress out over it, and get plenty of exercise . . .it is possible that the arm will heal without medical intervention. <said with great sarcasm>

    What the heck would the medical establishment do if we all said "oh that's o.k. I don't need medical help I'll just eat right, meditate and get plenty of exercise!"
  18. starryeyes

    starryeyes Senior Member

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    Actually, other than the "plenty" of exercise part that's all that I am able to do for CFS.
    Ugh!

    ID=Infectious Disease- thank you.

    The rest of what you just posted Anne is infuriating.
  19. gracenote

    gracenote All shall be well . . .

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    And

    There's something about this phrase "Only you can put it all together . . . " that feels so "blame the victim." If we can't put it "all together" than whose fault is that?

    That is one (of many) of my criticisms of a lot of alternative, mind-body, faith-based, or cognitive therapies even though I think many have benefits to offer. It they don't work then it's the patient's fault, not the methodology. You didn't try hard enough, believe enough, practice it long enough, use the right combination in the right order . . . How in the world do you ever get out of that bind? I would much rather hear something like "Here is a practice, a protocol, a belief-system, etc. Might it add something to your experience? Might it lighten your load a bit?"

    I would love to have the whole dialog move past the either/or paradigms. It's all in your mind OR it's a disease. It's all based on your effort, will power, ability to let go OR it's completely out of your hands. If XMRV proves to be THE cause or A cause, maybe we will all get to have a disease AND search for the best support for our healing, all at the same time.

    We're not crazy AND we've been driven a bit nuts!
  20. Marylib

    Marylib Senior Member

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    Blame the victim

    Blaming the victim is universal. I think it is a way for people to reassure them selves that they will not suffer the agonies they have heard or read about.

    "Hey, I take responsibility for my health. I eat right, exercise, sleep well -- I will never get CFS!"

    OOps....not so fast.....Oops looks like an infectious disease! Run for the hills!:cool:

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