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HHS already spruiking the benefits of CBT and GET

Discussion in 'Action Alerts and Advocacy' started by RustyJ, Jan 22, 2015.

  1. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Though the subject matter may be familiar, the source may come as a surprise, at least to some. The HHS is 'coming out' about its support for CBT and GET - thanks to the support of patients who helped legitimize P2P and IOM.



    http://healthfinder.gov/News/Article.aspx?id=695460
     
    Last edited: Jan 22, 2015
  2. Roy S

    Roy S former DC ME/CFS lobbyist

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    Note -- this is the start of a merged thread with 8 replies titled "US governments HHS website spreads UK SMC PACE propaganda"

     
    This is now on a US Health and Human Services website!
     
     
    "Therapists Must Ease Patients' Fear When Treating Chronic Fatigue Syndrome: Study
     
    Many with condition are afraid exercise will make the condition worse.
     
    WEDNESDAY, Jan. 14, 2015 (HealthDay News) -- Easing fears that exercise may worsen symptoms of chronic fatigue syndrome is crucial in efforts to prevent disability in people with condition, a new study says."
     
    http://healthfinder.gov/News/Articl...ivery&utm_medium=email&utm_source=govdelivery


    This brings to mind a cartoon I have saved. Betsy Ross, the famous seamstress of the original United States flag from the Revolutionary War is apparently working on her earlier version. On a monochromatic background it just has the words "Fuck Off Redcoats!"
     
    Last edited: Jan 22, 2015
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  3. Valentijn

    Valentijn The Diabolic Logic

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    I guess they didn't get the "Oxford sucks" memo.
     
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  4. Wildcat

    Wildcat

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    .
    Ever tried having a sane conversation with someone who is convinced that they have to reassure your deluded 'fears'?
    .

    Last year ME patients were dangerous extremists. This year we are fearful bunnies in need of reassurance and exercise. The latest propaganda makes us look like lazy pets who need to be coaxed into an exercise regime for our own good.

    .
     
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  5. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Note the date of publication on site.
     
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  6. Sean

    Sean Senior Member

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    I think that is more than a little unfair. I don't like a lot of what is happening with those two entities, but we have few options to try to move things forward and have to take them whenever and wherever they come up, however compromised they may be.

    Nonetheless, not good news, on the face of it.
     
    Last edited: Jan 22, 2015
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  7. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    My point, and the point of others, is that participation is not about opportunity, because the agenda was already set. The point of bureaucratic management of me and cfs is about control, not about caring for patients.

    Further there is the potential to cause significant harm by legitimizing govt agenda.

    I think the linked statement bears out the falseness of thinking the HHS has patient care at heart. Bear in mind that they would already have had some submissions.

    The timing of the statement (the same day as the Lancet publication, I think) leaves no doubt in my mind that the HHS is trying to get a message out.
     
  8. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    This is apparently from the new PACE paper, and this article linked in the OP likely has nothing to do with P2P or IOM.
     
    Last edited: Jan 22, 2015
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  9. Nielk

    Nielk

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    For the US government to pick this up and publish it on their official website means that they are currently endorsing this
    malfeasance.
    After 20 years of ME/CFS stakeholders urging the CDC to remove GET/CBT from their toolkit, this is their reply!
    This is an act of betrayal.
     
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  10. Nielk

    Nielk

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    For the US government to pick this up and publish it on their official website means that they are currently endorsing this
    malfeasance.
    After 20 years of ME/CFS stakeholders urging the CDC to remove GET/CBT from their toolkit, this is their reply!
    This is an act of betrayal.

    This has a lot to do with the P2P and IOM, in that it shows where the government stands and what their aims are = ME/CFS is made up in our minds!!!
     
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  11. zzz

    zzz Senior Member

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    As noted in another thread, this article appeared on the HHS Web site on the same day as the publication of the Lancet article. That's a little fast for a spontaneous response, don't you think? (Although there was a press release the previous day. We seem to have become fodder for self-serving press releases.) But it's been known and documented for a long time that Simon Wessely has his tentacles deep within the NIH, and we know that HHS isn't acting independently here. Wessely's role in the creation of the 1994 Fukuda definition, helping to make sure that no single physical symptom was required for diagnosis, has also been documented. Long tentacles again.

    Of course, human beings don't have tentacles. You can draw your own conclusions... :rolleyes:
     
    Last edited: Jan 22, 2015
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  12. biophile

    biophile Places I'd rather be.

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    It just looks like the above article was copied from HealthDay News (http://www.healthday.com).

    The healthfinder.gov site has the following disclaimer:

    HealthDay claims: "this site complies with the HONcode standard for trustworthy health information". What's that?

    https://www.healthonnet.org/HONcode/Conduct.html?HONConduct864654

    This part was amusing:

    "The HealthDay News Service is in compliance with the HONcode: Validity of certificate 21 Nov 2012 - Nov 2014"

    HONcode (http://www.healthonnet.org/HONcode/Conduct.html) has 8 principles, of which #5 seems most relevant:

    Back to the article, don't you just love their idea of "balance" i.e. quoting Knoop and Wiborg for an alternative interpretation:

    "Other experts came to a somewhat different conclusion. ..."
     
    Last edited: Jan 22, 2015
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  13. biophile

    biophile Places I'd rather be.

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    It just looks like the above article was copied from HealthDay News (http://www.healthday.com).

    The healthfinder.gov site has the following disclaimer:

    HealthDay claims: "this site complies with the HONcode standard for trustworthy health information". What's that?

    https://www.healthonnet.org/HONcode/Conduct.html?HONConduct864654

    This part was amusing:

    "The HealthDay News Service is in compliance with the HONcode: Validity of certificate 21 Nov 2012 - Nov 2014"

    HONcode (http://www.healthonnet.org/HONcode/Conduct.html) has 8 principles, of which #5 seems most relevant:

    Back to the article, don't you just love their idea of "balance" i.e. quoting Knoop and Wiborg for an alternative interpretation:

    "Other experts came to a somewhat different conclusion. ..."
     
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  14. Nielk

    Nielk

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    When doing a search on Healthfinder.gov for Chronic Fatigue syndrome or ME/CFS, this is the only study listed. The other links are to the CFIDS Association.

    why would they specifically single out this study to promote on their website?
     
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  15. Nielk

    Nielk

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    It seems like there is a duplicate thread HERE.

    @Kina @Sushi - Can a moderator merge these two threads please? Thank you.

    Moderator Note: Threads merged--the second thread posted merges into the first.
     
    Last edited by a moderator: Jan 22, 2015
  16. jimells

    jimells Senior Member

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    Does anyone still think the P2P report will be used by HHS to actually help patients?
     
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  17. Roy S

    Roy S former DC ME/CFS lobbyist

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    @Kina @Sushi
    In my opinion the merged thread is now too confusing to follow and was better as two separate threads. Could you at least put a note at the top of my first message from the thread that it was merged into this, please?
     
  18. Nielk

    Nielk

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    I think that the P2P will change everything for us. The NIH will look at the P2P final report and say: "Wow, we had no idea that:"

    · There was so little funding for ME/CFS in all these years compared to other diseases
    · ME/CFS exists
    · Patients have been neglected and misunderstood
    · There are 1 million patients and the financial burden is in the billions
    · We need studies in gut microbiome, in severe patients, in pediatric patients
    · We need centers of excellence
    · We need a biobank
    · There has been limited professional training
    · Current studies are too small
    · We need to develop case definition

    We never heard this from stakeholders, patients, advocates, clinicians and researchers and especially not from CFSAC.

    We are especially glad to have spent a million dollars in order for a panel of 5 non-experts to provide this crucial, previously unknown information in a report to us.

    Now that we know this information, we will quickly act upon them because as we have repeatedly stated, we care about the patient.
     
    Last edited: Jan 23, 2015
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  19. Roy S

    Roy S former DC ME/CFS lobbyist

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    It looks to me like the piece started with the PACE people who collaborated with the SMC people who fed it to the Healthday News Service which is subscribed to by healthfinder.gov which reprinted it.

    A SMC is reportedly going to be opened in the United States in 2016. :)
     
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  20. Esther12

    Esther12 Senior Member

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    LOL - I'm not as negative about the process as some, but definitely have concerns, and it does seem absurd to think that this process will lead to any new knowledge being uncovered.

    Also though, bureaucracies can be so ridiculous that they need to pay a million dollars to have obvious things written in a report before they can act on them.
     

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