Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
Discuss the article on the Forums.

America’s Hidden Health Crisis: Hope for Those Who Suffer from ME/CFS (posted by CDC)

Discussion in 'General ME/CFS News' started by ahimsa, May 12, 2017.

  1. ahimsa

    ahimsa Moved to www.s4me.info

    Messages:
    1,844
    Likes:
    4,274
    This was posted on the CDC Public Health Matters blog for ME Awareness Day:

    https://blogs.cdc.gov/publichealthmatters/2017/05/me-cfs/

    A short extract:
    Also, the photo is a huge improvement from the usual "drowsy-looking person sitting in front of a computer":

    Millions-Missing-Atl-Sept-2016.jpg

    There's a spot at the bottom of this blog for comments for anyone who wants to do so.
     
    Last edited: May 12, 2017
  2. Dolphin

    Dolphin Senior Member

    Messages:
    10,670
    Likes:
    28,172
  3. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    We'll have to see what 'updating' their website involves. Currently it looks rubbish to me. Unger owes us an appology for some of the BS and quackery that still has her name on it.
     
  4. adreno

    adreno PR activist

    Messages:
    4,843
    Likes:
    11,018
    Didn't they just cancel all funding for ME/CFS?
     
  5. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,811
    This is one of the best photos of ME/CFS I've ever seen. Not just sick enough to need a wheelchair, but too sick to sit in it at times.
     
    Snow Leopard, Daisymay, Mel9 and 7 others like this.
  6. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    874
    No. Budget proposals are being made that could do so, but nothing has gone thru. The NIH actually just got a $2 billion dollar funding boost over the next 5 months. But Trump is talking about slashing the budget for 2018.

    https://www.statnews.com/2017/05/01/nih-funding-congress-trump/
     
    Daisymay, dangermouse and Valentijn like this.
  7. jimells

    jimells Senior Member

    Messages:
    1,997
    Likes:
    6,099
    northern Maine
    This is how much the CDC cares about ME patients:

    http://www.cfidsreport.com/News/14_Chronic_Fatigue_Syndrome_Definition_IOM_Straus.html

    [​IMG]

    [​IMG]
     
    RL_sparky, Nielk and geraldt52 like this.
  8. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,811
    Fortunately Trump seems to have almost no one listening to him. He can only recommend budgets, but it's ultimately in the hands of Congress, from what I understand.
     
    TrixieStix and dangermouse like this.
  9. Dolphin

    Dolphin Senior Member

    Messages:
    10,670
    Likes:
    28,172
  10. A.B.

    A.B. Senior Member

    Messages:
    3,751
    Likes:
    23,188
    The situation is changing. I was pleasantly surprised to see the ME awareness day articles by the CDC and NIH. The tone is different and more appropriate.
     
    Last edited: May 13, 2017
  11. jimells

    jimells Senior Member

    Messages:
    1,997
    Likes:
    6,099
    northern Maine
    It is when patients still receive the same shabby treatment as 20 years ago. As recently as January 2017 I fired my useless primary care provider who *still* insists my illness is "primarily psychological".

    Even more recently, three weeks ago I showed up at an appointment with my new PCP (thank god he understands I have a physiologic illness) an hour early due to transportation difficulties. I informed the clinic staff that I needed to lay down, or fall down. Instead of finding a place for me to lay down, they insisted on sending me to the Emergency Room, located in another part of the same building. I reluctantly agreed, since I could see no alternative - sitting up for another hour was definitely not an option. The staff then immediately cancelled my appointment and assigned the slot to another patient.

    In the ER I was immediately diagnosed with panic disorder, based on my hyperadrenergic symptoms (note that I neither felt nor displayed any anxiety, fear or panic), and obsessive-compulsive disorder, based on my comprehensive list of symptoms and the use of this forum:
    In the end, this fiasco cost me $40 in transportation costs, a week to recover from the trip, and more psychological rubbish in my permanent file, which will continue to prejudice my care indefinitely into the future - and I never even saw the primary care provider!

    And I almost forgot to mention, the ER doc ordered a drug screen without my knowledge or consent, the results of which will also potentially prejudice future care and dealings with the Social Security gatekeepers.

    So tell me again how the CDC has changed their 30 year policy of burying the illness, publicly apologized for past abuse, and embarked on a comprehensive program to inform physicians that abusing ME patients will no longer be tolerated.

    I fail to understand how people are so easily swayed by a new coat of paint on the same old broken institutions, run by the same incompetent bureaucrats. CDC and NIH have clearly won the public relations campaign, while Ron Davis *still* can't get NIH funding and millions of patients continue to be abused by society and the medical industry every day, in the US and around the world.
     
    RL_sparky, Gemini, Chezboo and 14 others like this.
  12. AndyPR

    AndyPR Senior Member

    So we shouldn't praise them for making progress, instead we should always, and only, hold them to account for their deeds of the past? Problem is, you are blaming the people who are in post now for the actions of people who were in post 23 years ago.

    Have the CDC historically been crap about ME? Yes, that much is without dispute. Are there signs that things are changing? Yes, there is, and that should be encouraged, without forgetting the harm that has been, and continues to be, caused, by their previous actions.

    If all we do is criticise their efforts to improve, what incentive have they got to improve?
     
    ahimsa, Dolphin, meadowlark and 6 others like this.
  13. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,079
    Likes:
    4,352
    Toronto, Canada
    Its not an either / or situation.

    There is room, and a need for, multiple voices.

    Multiple voices is the essence of effective advocacy: a collaborative, complimentary voice working the inside policy/makers for their (incremental) change and a critical, adversarial voice from the outside exerting pressure for expeditious change.

    The carrot (of compliments) and the stick (of shame) moves the ass much faster.
     
    Solstice, Chezboo, meadowlark and 6 others like this.
  14. mfairma

    mfairma Senior Member

    Messages:
    202
    Likes:
    1,044
    Yup. All they have to do, whether intentionally or not, is just enough to placate patients, which isn't much given our history, and that saps patient desperation to demand more quicker and reinforces "reasonable" advocates who don't demand and who encourage patients to view incrementalism as the best achievable goal. It all feels pretty farcical, debates about whether what we're getting is good or just or enough.
     
    Aroa, TiredSam and Webdog like this.
  15. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,606
    It is the job of government health agencies to prevent, treat, cure diseases and care for patients. Their staff's salaries are paid by our tax money. This is what they are paid to do.

    The CDC and NIH have and continue to grossly neglect ME patients. The CDC employees currently working on ME are not our friends. Dr. Unger has purposefully failed us time and time again.

    Writing a May 12 letter is like blowing bubbles in the wind.

    We are on a sinking ship with major holes in it. We are very sick. Many of us have died and are currently dying - prematurely - and the captain and the staff are blowing bubbles in the wind!
     
    geraldt52 and Webdog like this.
  16. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,606
    This is the current CDC's ME/CFS representative - Dr. Unger

     
    Aroa, TiredSam, Webdog and 1 other person like this.
  17. JayS

    JayS Senior Member

    Messages:
    194
    Likes:
    534
  18. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,613
    Likes:
    12,435
    South Australia
    That was a long time ago. Fact is Reeves, Straus, Jones are all dead and buried. Times are changing.
     
    meadowlark, Valentijn and AndyPR like this.
  19. JayS

    JayS Senior Member

    Messages:
    194
    Likes:
    534
    Beth Unger's comments at CFSAC about PEM didn't sound like times were changing to me. You did see that the CDC links I posted are current as of today?

    BTW James Jones is neither dead nor buried. Still at the CDC, and just one year ago published this CFS paper about 'observed illness characteristics.'

    https://www.ncbi.nlm.nih.gov/pubmed/26973437
     
  20. ahimsa

    ahimsa Moved to www.s4me.info

    Messages:
    1,844
    Likes:
    4,274
    I agree with @ScottTriGuy - We need multiple voices in ME/cfs advocacy!

    On the one hand, I am happy for progress. On the other hand, there is not nearly enough. And some CDC sites definitely need updating.

    As I said in my first post, there's a space at the end of the CDC blog post for comments. Here's that link again:

    https://blogs.cdc.gov/publichealthmatters/2017/05/me-cfs/

    I encourage anyone who has the energy to post a comment. Tell the CDC directly the changes that you want to see. I think there are a lot of good points to be made and maybe that would sway someone over at CDC to make some changes.
     
    Solstice, ScottTriGuy and AndyPR like this.

See more popular forum discussions.

Share This Page