The CFSAC Meeting

Discussion in 'Fibromyalgia Main Forum' started by jasminetee, May 27, 2009.

  1. jasminetee

    jasminetee Member

    I'm very concerned for us all that soon, CFS and possibly FMS are going to be treated exactly like they are in the UK. I do believe that is the model that our CDC has decided is best for us. I'm not sure that writing letters is going to change this. I highly doubt it. I hate to be so cynical but I feel the need to be realistic.

    Something has to be done, but I'm afraid most of us are too ill to fight this. I am.

    I think Sophie Mirza and Ryan Baldwin may represent the future of children and young people with CFS and possibly, severe FMS.

    I know this is being discussed in other threads but those threads are doing my head in with so much info to scroll through.
  2. Khalyal

    Khalyal New Member

    But it's not because it's "best for us". It's best for The Economy. If the true proportions of this epidemic illness were actually admitted, the healthcare cost would be astronomical.
  3. QuayMan

    QuayMan Member

    I'm concerned about this too.

    The "UK model" of the illness is so attractive to health system: just tell people to exercise and give them CBT to persuade them to exercise.
    It sounds so easy. And doesn't involve expensive drugs or testing.

    The fact that a study of the CBT/GET clinics in Belgium found that people were working less on average after they did the course (which was on average 41 sessions) than before they started will probably be ignored. One problem with that report is that it is only available in French or Dutch.
  4. skeptik2

    skeptik2 Member

    Just think about this:

    ME becomes a "legitimate" disease because of science, not psychobabble.

    Treatments are standardized according to the severity.

    The FDA approves "this" or "that" for treatment(s).

    You go to the doctor; s/he says "I don't believe in CFS/ME"

    You say, "well, this is the test I want, and you are my doctor, and I insist you take care of me and allow me to have the FDA approved treatment, or else I'll sue the he** out of you"

    If we do get some form of single-payer system, even if only for the uninsured, it would have to give ME patients the "standard" care for ME.

    Let's hope, let's be optimistic; it all won't happen overnight, but I have no doubt after this week's news from De Mierlier and the CFSAC testimoney, AND the ipetition that will eventually be sent to Reeves' boss, we will prevail!

    BTW, I am the catherine cfsgeorge said "ripped the CDC and called for Reeves' ouster, on the first afternoon of patient testimony. I feeeel good!
  5. jasminetee

    jasminetee Member

    Thank you so much for ripping on the CDC. I was riveted to my screen when I watched that and I was rooting for you! It's good to know that you're feeling more optimistic about all this. When the Skeptik is optimistic, that's a good sign. ;)

    I also place a lot of hope in the parents of children with ME. They've often got the health and stamina to advocate for us. Their stories are gut-wrenching too. I think that's why Reeves doesn't attend on the 2nd day when they give their testimonies. I hear he's usually been MIA during testimonies over the years.

    The Whittemores are parents of an adult daughter who has severe ME and look what they're accomplishing for us. :)


    [This Message was Edited on 06/04/2009]
  6. Rafiki

    Rafiki New Member


    The way that all went down, was recorded, and is being understood is very important to this battle.

    Reeves had trouble reigning in his irritation during his presentation. He's so over this. I don't think he has a fiercely held agenda the way Weasely does. I think he just got stuck with this and, yes, believes what many/most doc.s have believed - we're malingerers of some kind. Ok, not good, but not nearly as difficult to fight as someone with an axe to grind like Weasely and White. I think Reeves would be very happy to go away and work on something else. May it happen soon.

    And, the side of truth in that room was eloquent, articulate and patient - no pun intended!

    It was a small victory for us. Thank you for the big part you played.


    ETA It's HUGE that this meeting is on video available online. The side of truth had the nay sayers on the run and that's all available at NIH!!! Seriously - how cool is that?![This Message was Edited on 06/04/2009]
  7. skeptik2

    skeptik2 Member

    Thank you for the support, I needed that as I thought I sounded terrible!

    Best friend told me I "took no prisoners". Afterwards, I was sorry I ripped the CFSAC also, in the first paragraph, but when I wrote the speech, I decided I also wanted to make them fighting mad, too. Still do think that way, after thinking about the results we got from them.

    So be it...que sera, que sera.

    The ipetition is not sufficient; could someone write one to the Sec, DHHS, Kathleen Sebelius?
    I don't have a computer, well, just got one Friday and haven't learned how to turn it on, LOL!

    Think we must have one to Sec. Sebelius to go along with the Committee's Report to her, don't you?

    (a little optimistically)
  8. AuntTammie

    AuntTammie New Member

    first of all, thanks for giving your input during the meeting - that is very much appreciated

    second, the CFDIS association has an email letter to sec of health on their site now - you can send it as is, or add your own stuff to it......I sent it, but I also added to it, bc I felt like it was not sufficient (but was a start and I did want to support that)
  9. AuntTammie

    AuntTammie New Member

    I have been worried about this for awhile....I am really hoping that the latest meeting and the most recent scientific research will help prevent this from happening, but unless someone truly does reign the CDC in, there is still a real likelihood that we will wind up following in the UK's ever-so-wrong footsteps and that is a very scary proposition indeed....unfortunately, aside from what we as a population are doing to make our voices heard, I don't know what else can be done - it's up to those with more power (and energy)
  10. cfsgeorge

    cfsgeorge New Member

    The ME/CFS community is too strong and too smart in the US to allow Reeves/CDC to adopt the UK's NICE and their psychiatric stance on it. The outcry would be too tremendous from all of us. Who in the ME/CFS community would side with the UK's psychiatric model? i don't see any strong support for it except from certain goverment agencies and pharmaceuticals that have either a political or monetary interest for the psychiatric model of CFS/ME.

    More importantly, PWC and PWF need to look at themselves first before they cry out against the whole psychiatric stance. If you're taking medicines intended for the mentally ill, then how can you begin to "cry out" against the psychiatric model and not be a hypocrite? If all the drugs except lyrica that are approved by the fda are A/D's or re-uptake inhibitors, then that just further pushes these DD's into the realm of psychiatric and not physical.

    We need to first start with ourselves by saying "NO" to taking drugs made for the mentally ill. This sends a clear message that patients will not be treated as mental cases. This is a very real physical disease just like heart disease, cancer, diabetes, and AIDS. This should be our very first step IMPO. If u can't do that, then you can't fight for your cause.
  11. QuayMan

    QuayMan Member

    cfsgeorge, I'm not as confident as you.

    The ME/CFS community is strong in the UK and they still got CBT/GET.

    Only 110 people watched the first day of the CFSAC meeting live, 70 the second day (and some of them would have been from outside the US), so I'm not sure if the ME/CFS community in the US is really that strong.

    How many people in the US understand the flaws in the arguments against CBT/GET?
  12. cfsgeorge

    cfsgeorge New Member

    I was shocked to see how little people actually watched the CFSAC meeting. I know most PWC are too ill to participate in CFS activism, but that was an appalling number when you expect to see doctors, scientists and healthy patient advocates participating.

    Nevertheless, there is no way any US CFS doctors, researchers, advocates or national organizations would ever endorse the UK's psychiatric model of CFS/ME. If they did, their careers in CFS would be terminated by total outrage from the US CFS/ME community.

    I'm not sure what happened to the UK, but that has not happened anywhere else in the world including canada, europe, japan, and australia. i don't know the UK's politics or their health care system, but many blame it on "evil" doctors pushing and expanding psychiatry onto "invisible" diseases like ME/CFS.

    Even so, there is just too much good research out now showing purely physical problems we all have which CBT and GET cannot treat. How can CBT/GET help with the viral re-activations, hormonal deficiences, PEM/DPEM, NMH/OI, cognitive problems, sleep disorders, disabling Pain and Exhuastion? And there are studies showing CBT and GET are ineffective even harmful for PWC. We all know that you're not going to talk or exercise your way out of CFS/ME or millions would have done so decades ago.

    Anyhow, i just cannot see UK's psychiatric model of CFS/ME being adopted or accepted into our US health care system and its CFS policies. Dr. Reeves knows he may not have a job if he makes the wrong move here.
  13. QuayMan

    QuayMan Member

    cfsgeorge: unfortunately the UK model has been adopted in other countries.

    In Belgium, the government set up five rehabilitation clinics which basically just over CBT/GET.
    The results weren't great (on the questionnaires, people looked like they improved a bit; on exercise tests, no change (despite on average 41 sessions!) and they worked on averable a little less.

    Things are probably even worse in the Netherlands.

    Most other countries don't have any particular model but have heard vague references to things not going well in Sweden and Denmark with them moving towards adopting NICE or adapting it for their countries.

    The official Australian guidelines were bad and basically just CBT/GET.

    The CDC website already links to the NICE guidelines on "CFS/ME".
    [This Message was Edited on 06/07/2009]
  14. skeptik2

    skeptik2 Member

    For every 170 people who watched the videocast, more (x4) are probably in the process; this has been broadcast far and wide, and I'm sure they are still counting the people who visit if only for a little while....

    Don't stop now!!

    Keep accessing the site; keep watching it for a little while each day; get a little tablet and write down the Hr/Min where you left off last time, then FF to that position and listen some more!

    It will feed your soul; lighten your spirit and make you feel sooooooo good! Gee, sounds like Kentucky Fried Chicken, LOL...

    I think Reeves will "see the light" and resign, what do you think about that? I'm "visualizing" it, so who knows?

    Keep up the pressure; expand your emails to others. I have a group of 20 I send out to someone each day. All the best websites, the best info, the best things to sign, get involved in...


  15. cfsgeorge

    cfsgeorge New Member

    QuayMan and skeptik2 thanks for not giving up and pushing us to help our cause. I think most are way too sick and disabled to fight on our own. thanks for all your great ideas and for making it easier for all of us to participate.
  16. skeptik2

    skeptik2 Member

    Thank you for your wonderful support!

    My sicko friends like the sites where all they have to do is say "yea" or "nay" and write their comments; wish we had more of them. They are easy for even some of the sickest to support and get done. Most have laptops and they can sign things from their couches, chairs or beds.

    We must not stop now; June 30 is the deadline for comments to the CDC: I am too tired to really analyze their crap, but I can sure make a comment about a Congressional Inquiry if they send us down the UK road and ignore the science finding answers they haven't even thought of yet!

    Keep it up folks...I put a message on the ChitChat Board, asking those kind, energetic folks to come on over here and help us!


    hugs to all...
  17. frickly

    frickly New Member

    I keep tring to watch the video cast and it times out every three minutes. Very annoying.... Anybody know how to fix this? I have been spending almost all my time in the past few years trying to get better. As we all know this takes every ounce of energy we have. I do feel better now and would like to be more involved in the political side of things as I, like all of us, have been belittled and called a hypochondriac for seven years.

    My four year old daughter had a flu mist a few months ago and immediatly became lathargic and sick. After taking her to the doctor twice and being dismissed I finally insisted on blood tests. We found that she had mono. Her lathargia is better but she is still ill with upset stomach and has to lay down several times throughout the day. I beleive this disease is hereditary and this is why it is even more important to fight for, not just us, but our children. It is frightening to me that if I discuss my daughters symptoms with her doctor that they will dismiss me or possibly think I am an abusive mom as some other mothers have encountered.

    Thanks for keeping us informed.
  18. jasminetee

    jasminetee Member

    I'm so sorry to hear about your daughter. My prayers go out to her.

    Re: the CFSAC videos. I didn't have this problem too much but a bit. Have you tried clicking on "Launch in standalone player" which is under the small video screen? You can also expand the new player you launch to the size of your screen which is nice.

    Here's the link again for ppl:

    Click on "Here" and "Here" under Spotlight in the right-hand box.
  19. QuayMan

    QuayMan Member

    I'm appending a message (from earlier today) from a list I read where somebody (who doesn't have ME) posted a list of the tests NICE recommends and doesn't recommend for ME and CFS patients.

    The CDC CFS section now links to the NICE guidelines.

    As you can see, they generally recommend against testing for viruses.

    Generally doctors main role is to rule things out in the UK (but with a lot of the services you only have 1x10 minute appointment with a doctor and then it's off to the psychologist or physiotherapist (=physical therapist) or Occupational Therapist for either 1-to-1 or group therapy. There is basically no prescribing of drugs for the conditon.

    It's similar in Belgium, what were set up were five rehabilitation centres for CFS (which have cost over 10 million Euro (around 14 million US dollars),i.e. the "treatment" is non-drug treatments. Similarly the Netherlands.

    Certainly in the UK and probably in other countries, people were probably in a better position to get drug treatments (apart from antidepressants) before the clinics were set up or guidelines were created - one might hit on a random consultant who might take an interest.

    Generally it is acknowledged that viruses or other infections may have triggered the condition but (even though, as somebody pointed out, people may continue to have similar symptoms to at the start of the illness!) supposedly the virus/infection no longer is playing a role. Any symptoms are generally put down to deconditioning, poor sleep habits and stress and treatments are aimed at those factors.

    I agree with your point. The US is one of the few places where the approach hasn't been dominated by CBT and GET which is why it is scary to see that the CDC wants to develop "international consensus" (which, based on past experience, involves selective use of experts e.g. one might have Peter White from the UK, Gijs Bleijenberg from the Netherlands, Andrew Lloyd and/or Ian Hickie from Australia, etc).

    ~~~~NICE Guidelines on testing (there's a link from the CDC CFS website)~~~~~~~~

    You might like to read the NICE quick reference guide for ME - it says:

    These tests should usually be done:

    l urinalysis for protein, blood and glucose
    l full blood count
    l urea and electrolytes
    l liver function
    l thyroid function
    l erythrocyte sedimentation rate or plasma
    l C-reactive protein
    l random blood glucose
    l serum creatinine
    l screening blood tests for gluten sensitivity
    l serum calcium
    l creatine kinase
    l assessment of serum ferritin levels (children
    and young people only).

    Use clinical judgement to decide on additional tests to exclude other diagnoses.

    Do not do:
    l tests for serum ferritin in adults, unless other tests suggest iron deficiency
    l tests for vitamin B12 deficiency or folate levels, unless a full blood count and mean cell volume show a macrocytosis
    l serological testing, unless there is an indicative history of an infection; if so, consider tests for:
    – chronic bacterial infections, such as borreliosis
    – chronic viral infections, such as HIV or hepatitis B or C
    – acute viral infections, such as infectious mononucleosis (heterophile antibody tests)
    – latent infections, such as toxoplasmosis, Epstein–Barr virus or cytomegalovirus.

    Do not do the following tests routinely:
    l the head-up tilt test
    l auditory brainstem responses
    l electrodermal conductivity.

    The following guidance is also given:

    Consider other diagnoses or comorbidities before attributing clinical features to CFS/ME

    In particular, investigate these `red flag' features:

    l localising/focal neurological signs
    l signs and symptoms of inflammatory arthritis or connective tissue disease
    l signs and symptoms of cardiorespiratory disease
    l significant weight loss
    l sleep apnoea
    l clinically significant lymphadenopathy.

    Follow 'Referral guidelines for suspected cancer' (NICE clinical guideline 27) or other NICE guidelines as the symptoms indicate. See for details.
  20. Andrew111

    Andrew111 Member

    I saw the results of one study, and it showed that most subjects were not helped. But what happens is even if a few are helped, many people use that as an excuse to apply it to all sufferers.

    Also, one doctor pointed out that any help from anti-depressant does not prove that it's psychological. All it suggests is that neurotransmitters are involved. And most of us agree that CFS hurts the nervous system. But the problem is, most don't seem to grasp this.

    In the UK they define CFS as physical and mental fatigue for 6 months and happening at least 50% of the time. And in research they require that subjects with physical illness that can cause fatigue be excluded, but subjects with things like depression, sedentary lifestyle do not necessarily have to be ruled out. And it is optional to compare subjects with depression to those without. But when these UK studies get cited, do they explain if they did or didn't controlled for depression, sedentary life style, etc. I've yet to see it. And considering how common depression is, this can skew like crazy.

    Sad thing is, even some of our US supporters recommend CBT and graded exercise without cautioning that this can also make people worse. Also, they fail to mention the two-day bicycle test in their recommendation to doctors as an example of what can go wrong.

    [This Message was Edited on 06/10/2009]
    [This Message was Edited on 06/10/2009]