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!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

Good News From The NIH..Patient Advocate for NIH State of Knowledge Workshop

Discussion in 'General ME/CFS News' started by shannah, Dec 30, 2010.

  1. rwinsmom528

    rwinsmom528

    Messages:
    26
    Likes:
    0
    I agree, and I even have a son and a brother on the Autism spectrum. No offense taken here.
  2. Sean

    Sean Senior Member

    Messages:
    1,226
    Likes:
    1,988
    Thanks. I also have autism spectrum disorders in my family, and have helped care for those people, so I am quite aware of the problem and I am certainly sympathetic to those dealing with it.
  3. lancelot

    lancelot Senior Member

    Messages:
    324
    Likes:
    2
    southern california
    i also agree and have believed that these are totally different and unrelated diseases, but didn't want to get bashed here for having this opinion. it's good to see others see the light and are brave enough to speak out.
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,044
    Likes:
    885
    Concord, NH
    Very good points. That is why I had disabliltiy testing done, I don't want to work until I am bedridden! What would be the poing of that?! When I had disability testing done last year, and my sister asked the researcher about mortality issues. Something like if we had shorter life spans, I believe the researcher said NO, but I don't think that there is really any good research in this regard? Am I wrong?

    GG
  5. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,007
    Likes:
    4,978
    Sth Australia
    Wow!!! that is all I can say. Pat Fero and Mary Schweitzer are two of my top three nominatees if i'd been able to put in a nomination, so im real glad to see them there.

    What a great list of people the NIH has choosen to accept to represent us. Wow!! They are obviously serious about listening to our imput
  6. shannah

    shannah Senior Member

    Messages:
    843
    Likes:
    177
    Hi ggingues,

    There was a well formulated reply by CBS the other day in another thread to this question.



    Is there actually evidence that people are dying from CFS? I don't mean suicides, but disease-related deaths that can be proven?


    "Very little has been done in this area. The only article of note was by L. Jason and it is limited - "The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS." This is clearly a non-representative sample it but at present, ME/CFS is never listed as a cause or a contributing factor to death. An additional problem is the cohort issue. ME/CFS by what definition?

    That said, the following paragraph concerns the ages of death of those patients included in the Jason study:


    If one examines national rates of death for these conditions, the ages of death for these three conditions [heart failure, cancer and suicide] among the patients with CFS are considerable earlier. The median age of death for cancer in the United States is 72 (Reis et al., 2003, versus an average age of 47.8 for the CFS sample), the average age of death for suicide in the United States is 48 (Centers for Disease Control, 2003, versus an average age of 39.3 for the CFS sample), and the average age of heart failure is 83.1 (CDC, 2003, versus an average age of 58.7 years for the CFS sample). What this suggests is that those from this memorial list who did die of cancer, suicide, and heart failure were considerable younger than what would have been expected from the general population, which means that CFS might have increased the risk of death for at least this sample.

    http://www.theoneclickgroup.co.uk/do...20Patients.pdf

    Health Care Women Int. 2006 Aug;27(7):615-26.
    Causes of death among patients with chronic fatigue syndrome.

    Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S.
    DePaul University, Chicago, IL 60614, USA. Ljason@depaul.edu
    Abstract

    Chronic fatigue syndrome (CFS) is a debilitating illness affecting thousands of individuals. At the present time, there are few studies that have investigated causes of death for those with this syndrome. The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS. There were approximately three times more women than men on the list. The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is considerably younger than those who died from cancer and suicide in the general population. The implications of these findings are discussed. "
  7. IamME

    IamME Too sick for an identity

    Messages:
    110
    Likes:
    5
    http://www.meactionuk.org.uk/Vade_MEcum.htm


    CFSAC Testimony: Former Physiotherapist and Occupational Therapist
    Canadian/American Dual Citizen, Alberta, Canada October 11, 2010



    http://www.meactionuk.org.uk/Byron_Hyde_Nightingale_Research_Foundation_Paper.htm

    http://www.25megroup.org/Information/Medical/dowsett%27s/Late%20effects%20of%20ME.htm


    http://www.meresearch.org.uk/information/keypubs/EvME.pdf


    Extracts from Magical Medicine: How to Make a Disease Disappear, by Professor Hooper

  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    IamME: Thank you for this info. I wasn't aware of it.

    I'd like to add that approx. 10%, I believe, of the tahoe cohort has contracted normally vanishingly rare (other than in AIDS and ME) lymphomas. In Osler's Web, it's noted that in the early eighties (just prior to the AIDS and ME epidemics) the chance of an American getting one of these lymphomas was approximately 30 Million to One- only about 10 people in the entire US got one every year. Double that number (19) have gotten them among the approx 200 patient tahoe cohort. Prof. Seymour Grufferman, perhaps the world's foremost cancer epidemiologist (and holder of three doctorates in epidemiology) applied several times to NIH in the 80's for a grant to study the link and was turned down as was everyone who applied to NIH for a grant to study ME in the eighties.
  9. shannah

    shannah Senior Member

    Messages:
    843
    Likes:
    177
    I can't put my fingers on the report I read, I think last spring, of an autopsy done on a woman in her late thirties. She was 'declared to be in good health except for CFS' and the cause of death was listed as SADS (Sudden Adult Death Syndrome).

    Perhaps a thread on this topic should be started on this if anyone's up to it.
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,044
    Likes:
    885
    Concord, NH
  11. Dolphin

    Dolphin Senior Member

    Messages:
    6,726
    Likes:
    5,583

See more popular forum discussions.

Share This Page