New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
Discuss the article on the Forums.

This garbage is EVERYWHERE now!! Is there No humanity!?!?!

Discussion in 'General ME/CFS News' started by TheMoonIsBlue, Feb 21, 2011.

  1. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    58
    This CBT/GET crap is everywhere now!!! It's been on the MSNBC scroll thing all weekend.....including this morning. Just what I needed to wake up to- "Study suggest Exercise and CBT better for chronic fatigue than taking it easy"

    (Could one of these shrinks clarify, when I am laying in bed unable to open my eyes or roll over, feeling close to death, does this qualify as "taking it easy?" I'd really like to know)

    Here is the article on CNBC, PLEASE try to register and post a comment.

    http://www.cnbc.com/id/41664159

    http://www.cnbc.com/id/41654130


    Wasn't there a post stating that something like 40% of these participants had a BMI of being overweight and also suffering from a diagnosed psychiatric condition??

    ETA: Isn't it nice they just used "Chronic Fatigue" I guess we could fight back saying, well hell, chronic fatigue may be improved by exercise as Chronic Fatigue is just a symptom of about a million things, including sitting on your butt all day drinking a case of mountain dew and smoking.

    Chronic Fatigue SYNDROME is NOT Chronic Fatigue.

    I'm angry now, can you tell. Seriously...........are we back in 1990?? WHY OH WHY is the USA media even picking up this CRAP from the UK when we have real, GROUND breaking, GROUND SHATTERING research into a retrovirus and other immune dysfunction in CHRONIC FATIGUE SYNDROME patients right here in the USA, done by real SCIENTISTS?

    No other disease gets treated this way. In how many ways and for how many YEARS are we/have we going to be insulted and marginalized?

    Does anyone know if WPI will have a reponse to this study? Or perhaps Dannica Moore (sorry if that is spelled wrong) will go on one of the morning shows to rebuke this study?
     
  2. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,916
    Likes:
    12,775
    Sth Australia
    It shouldnt be up to the WPI to rebuke anything which comes along over CFS/ME... their job is studying this illness and treating us, rebuking and getting out the true facts is the CAA's job and other patient organisations.
    ...

    I was surprised to find out that that crap has even got as far as New Zealand and was published in one of their newspapers there. (so Im now waiting for it to hit Australia.. as far as I know we are free of that bullshit right now).
     
  3. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    58
    Hi Tania, you're right, it isn't up to the WPI......I was just wondering if perhaps Donnica Moore, who has been on a lot of the morning shows like Good Morning America when the XMRV news broke, would maybe have something to say about it. But you're right......frankly, why should the real scientists waste their time responding to trash?

    But the CAA SHOULD RESPOND, absolutely.

    I'm just worried about how this crap CBT/GET study is going to impact the public perception of CFS once again, unless we have a real reputable doctor who goes on TV to rebuke the damage it is going to do.

    I mean seriously..........it has been on the CNBC scroll all weekend! Is this study from the UK really that important "breaking news"?? I don't get it. It seems like non-news to me- the same crap we've been getting for years, that we know is FALSE.

    It seems like real SCIENCE takes years to work out, and years to get any media attention........and they love to tear it to shreds to disprove it........but any short term study done by psychiatrists that possibly links a disease to psychological problems gets picked up by the media so quickly, spread all over.........

    Did Science die when psycho-science gained popularity?
     
  4. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    58
    Oh wait, looks like the CAA did respond, Justin Reilly did a recent blog on this "CAA: GET and CBT EFFECTIVE"

    So much for taking a strong stance :(
     
  5. justinreilly

    justinreilly Senior Member

    Messages:
    2,496
    Likes:
    1,214
    NYC (& RI)
  6. fla

    fla Senior Member

    Messages:
    234
    Likes:
    45
    Montreal, Canada
  7. alex3619

    alex3619 Senior Member

    Messages:
    12,528
    Likes:
    35,244
    Logan, Queensland, Australia
    The spread of the CBT/GET claims is a triumph of prejudice and spin over science and honesty. It is a flash in the pan however.

    Patients and patient organizations do have to fight this or be seen as irrelevant. It is both right, and wrong, to claim the WPI should be saying something. This is not about the WPI specifically, it is about the global scientific and medical communities. The role of science should be to challenge bad science and quackery. When it doesnt happen, the global scientific and medical communities are then complicit in quackery.

    I look at it this way. It took many years and millions of pounds to produce a very poor PACE result, something that is lost on the media. In the same time frame as the PACE news blitz we had two good animal model studies, plus a brilliant video from Alan Light. More is on the way. If the science is correct, the evidence will continue to mount, and at some point the biopsychosocial model will be so obviously ridiculous that even the UK establishment will be severely embarrassed.

    If the science will do this, why should we act? Because science takes time and funding. The longer it takes, the harder our lives will be. The more prejudice and ignorance very sick and disabled people have to face, the harder it is for us to advocate, which makes it harder to drive science funding.

    We don't need to do anything much to watch science stomp on the psychobabble. If we want it to happen in our lifetimes though, we have to engage, as and when we are able, and not leave it up to the slow march of history.

    Bye
    Alex
     
  8. Desdinova

    Desdinova Senior Member

    Messages:
    276
    Likes:
    134
    USA
    It's everywhere because this is a War. Pure and Simple, this is a War. Science has little to do with it on their end because they have a political agenda. Politics involves Money and Power. We're an immense cost to them now, with a potential to be an even greater cost to them in the future. For many aligned with the Wesley School of thought it's also a threat to their Power. What they've done is launch a very effective Carpet Bombing Campaign against the CFS/ME community.

    Letting Science sort Science out while nice in principle it is IMO a fallacy a slippery slope a trap that we play into time and time again. How many decades will it take for science to sort things out? How long did it take with MS? This is largely in response to XMRV and MLV's in regards to CFS/ME. The negative studies are big bombs (bunker busters, Small tactical Nukes) for Specific Targets like the WPI etc. And things like this press release about the pace trial which gets picked up and published in mass is a carpet bombing run for the small Multiple targets like you and me. It’s a War folks to approach it with any other view point and attitude is to lose.
     
  9. Ian

    Ian Senior Member

    Messages:
    276
    Likes:
    218
    The most profitable patient is one that is sick every day of his life. These people have no interest in curing you of anything.
     
  10. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    58
    I am still in disbelief that in 2011 ME/CFS is not widely accepted as a viral disease. Disbelief.

    Do you think the US media would have picked up this PACE study from the UK if the XMRV news hadn't broke in Oct 2009? No. No, I do not.

    Mind blowing.
     
  11. August59

    August59 Daughters High School Graduation

    Messages:
    1,617
    Likes:
    624
    Upstate SC, USA
    We better start using ME only and drop the CFS completely. What chance does someone that is even bed ridden have for getting disability now! I would be willing to bet that our own government is behind all this publicity. They want out of it and they are wanting to cut funding anyway, so it wasn't like we were going to get any additional funding anyway. But now we will get much less!!
     
  12. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    58
    You're right August.....I've always been tempted, especially lately, to tell the doctor or nurse I have "Myalgic Encephalomyelitis". I always make of a point of saying "I am here because of my Chronic fatigue IMMUNE DYSFUNCTION syndrome", but all they ever hear is "Fatigue".

    IT IS DEGRADING TO BE SITTING IN A DOCTOR'S OFFICE FEELING NEAR DEATH, OR TO HAVE SOMEONE ASK WHAT IS WRONG WITH YOU, AND HAVE TO SAY YOU HAVE CHRONIC FATIGUE SYNDROME. IT IS EMBARRASSING. AN ILL PERSON SHOULDN'T HAVE TO FEEL EMBARRASSED!

    The last appointment the nurse asked, "So You've been having some Fatigue?" I said "YEAH, only for going on SEVEN YEARS."

    If I never hear "Chronic Fatigue" again It'll be a happy day.

    Yeah, we're Broke here in the US..........if they do find a treatment.........it's going to be a battle................

    Why do they deny health insurance based on a diagnosis of Chronic Fatigue Syndrome, if our own government says there is no treatment? Perhaps they KNOW the real severity? And the cost that will be involved?
     
  13. anciendaze

    anciendaze Senior Member

    Messages:
    1,815
    Likes:
    4,677
    Just in case you missed it, there is a shift in definitions. The people who redefined M.E. as a belief you have a disease called M.E. are now redefining fatigue to remove objective data:
     
  14. August59

    August59 Daughters High School Graduation

    Messages:
    1,617
    Likes:
    624
    Upstate SC, USA
    That is ashamed that you get denied health insurance for a disease that CBT is suppose to fix. I'm in the process of filing for disability, but i doubt I have a chance of getting it. Not now for sure! It is surely beginning to become apparent what the writing on the wall wil be.

    No one with positive xmrv studies can get them published
    The phase II BWG meeting created more question than it did answers (this meeting also had Dr. Alter being very vocal about a viral cause for CFS)
    Dr. Alter seems to have had his lips glued shut and should be releasing some new info at seminar tomorrow, but apparently there is nothing new a all!!
    No positive xmrv studies, but plenty of contamination\negative studies getting published
    I'm betting the next BWG meeting will fall apart due to no unanimous consensus. That is the only reason Stoye is there, to be confrontational and cast doubt.

    This my take on things and mine only, but with the way things are going I'm not too far off.
     
  15. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,328
    Likes:
    4,052
    N. California
    I sent Dr Donnica an email about this. Hopefully she will respond and do something.

    I also sent the link to this forum post, so maybe she will leave us a comment.
     
  16. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,328
    Likes:
    4,052
    N. California
    I just got a note back from Donnica Moore. Wow... that was fast! Here it is, FYI:

    "I will do what I can. I'm cutting back on GMA Health right now because I am SWAMPED, personally & professionally, but I will see what I can do.

    Thanks for sending this to me.

    Donnica"
     
  17. Lala

    Lala Senior Member

    Messages:
    321
    Likes:
    65
    EU
    Oh, how disgusting and unbelievable piece of excrement! Is this going to never end ?!
     
  18. Freewindblowin

    Freewindblowin

    Messages:
    19
    Likes:
    0
    SW Idaho
    Bless you Dreambirdie, for taking it directly to one of the misinformed news writers!

    Yes!!

    And this news writer is conscientious, so that she reads her emails. Hmmm...
     
  19. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    274
    Long Beach, CA
    Were you meaning Dr Donnica? 'Cause she's not "one of the misinformed news writers". She's one of those media doctors, but she has a son and a husband with ME/CFS. She's done a pretty good job of explaining it on TV. Then she became some kind of spokesperson for the WPI, and oddly enough, I haven't heard much from her on the subject since then.
     
  20. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,909
    Likes:
    3,563
    Somewhere near Glasgow, Scotland
    Anyone who suggested GET/CBT as the ONLY effective treatment for syphilis or Lyme Disease would lose thier medical licence and end up in jail eventually.
    Sorry if folk don't like me linking syphilis but that and Lyme Disease are both neurological, and have serious effects on the brain AND health of patients, Al Capone for example died of the end stage of syphilis (General paralysis of the Insane)
    The psychiatrists should be helping us with the psychologicla effects of a chronic awful illness, and the damage it does to the brain itsel fand other fareas all which affect our minds (brain damage, screwing up our sleep patterns, disregulating the hypothalamus, pituitary and adnrenal glands)

    Since they have *chosen* not to do so, they are criminals.
    Hm, how could we get the "good" medicla community to create a "line in the sand" a future record that would prove that those psychs who from this point on, refuse to treat this as an orgnaic illnessm are BREKAING THE LAW and will one day, be utterly screwed for it?

    could we fund a conference, or some such for true science based researchers, docs etc, to have their "D-DAY", Day of Intent, to draw this line in the sand by document or deed?
     

See more popular forum discussions.

Share This Page