provider toolkit

Discussion in 'Fibromyalgia Main Forum' started by LindaJones, Aug 21, 2009.

  1. LindaJones

    LindaJones New Member

    the cdc website has information that cfs patients can print out and give to their doctor

    I printed out the provider toolkit and gave a copy to my doctor.
    It has some good information.
    There is also a continuing education course for doctors.
    Doctors get continuing education credit for taking this course.
    [This Message was Edited on 09/01/2009]
  2. AuntTammie

    AuntTammie New Member

    I think that you are posting this intending to help, & thank you if that is so, but if that's the case, it would be much more helpful to tell people to avoid this......I absolutely would NOT trust ANYthing from the cdc about CFS and definitely would not be sharing anything that they put out unless you actually want the doctors and the public to continue to misunderstand, mistreat, and psychologize our illness.....and most people with ME/CFS who have read much at all about the illness and the cdc's involvement would not want the cdc's lies and propaganda spread either.....for more info go to the Osler's Web website or get the book Osler's Web.....there are other sources that discuss this stuff, too, but Hillary Johnson is among the best.....why do you think that there have been so many petitions to get the cdc to either change their leadership dramatically or butt out of the whole cfs arena? (bc they have caused incalculable damage already)

    ps even if this actually contains helpful info (which I doubt, based on all the stuff by them that I have read concerning CFS), just having their name attached to it spreads the misconception that they are actually a knowledgeable, respected source for info (and then people will believe that they can trust all the info from that source, which means that they will believe the harmful stuff, too)
  3. gapsych

    gapsych New Member

    Thank you for providing a site where people may find some helpful information. I don't think your intentions should be slammed.

  4. AuntTammie

    AuntTammie New Member

    quoting myself here, "I think that you are posting this intending to help, & thank you if that is so, but if that's the case, it would be much more helpful to tell people to avoid this."

    I specifically said that I think she IS intending to help AND I THANKED HER FOR THAT - that is hardly "slamming" her intentions!!

    I DID slam the CDC and very rightfully so....have you completely ignored all the cr@p they have done to us? Why on earth would anyone with ME/CFS ever trust anything by the CDC if they actually knew all that they did and are still doing?! And spreading around anything that they put out having to do with ME/CFS is also indirectly spreading the idea that they are a good resource, which will only serve to reinforce their lies and misinformation (even if this particular toolkit is actually accurate.....people will look at it and think that if they want more info they should go to the CDC, and the info on the CDC's site about ME/CFS is so incredibly wrong and so totally in support of the whole idea that ME does not exist and CFS is basically just being tired and is pretty much totally in people's heads, ie that what you really want people reading?)
  5. AuntTammie

    AuntTammie New Member

    The CDC have been consulting with the UK's NICE people. We need to do everything we can to keep our country from treating people with ME/CFS the way that they are treated in the UK. Do you want people to start getting committed to mental institutions against their will for having CFS? It's already bad enough here. We don't need it to get worse, and anything that lends credence to the CDC helps further their cause, no matter how well intentioned it may be.
  6. jasminetee

    jasminetee Member

    is not working for ME!
  7. simpsons

    simpsons Member

    thank you for your good intentions in posting linda the cdc have nre ot really been our friends thats what all the campaigning has been about. it is vital that the states fight against the cdc joining up and using the nice guidelines that are in operation in the uk. uk patients suffer greatly and receive nice recommendation of graded exercise therapy and cbt which has bed bound or wheelchair bound many patients and made many not so severe patients end up severe.

    it is very dangerous to promote this and educate dr.s this theory that we are the undeserving sick thinking ourselves sick and just de conditioned the nice guidelines ignores the five thousand papers showing the physical research paper including gene research

    a good one to show and promote would be the canadian guidelines which is very good for dr.s to work from and offers good advice and treatment plans with ref to research papers dr.s can check on.

    we have all lobbied the cdc and cfsac with all the energy we have as change must happen if there is to be an end to the treatment and research situation we have now.

    lets not fight amongst ourselves or we waste our precious energy

    aunt tammie i know you are one of our most passionate fighters and we all love you for that i know you did not mean to cause any bad energy

    wessley white and reeves push out their flawed research with such entry criteria wideness that non me/cfs patients such as depression get inhcluded so that they can say cbt and get work

    this causes divide and conquer and makes me/cfs a controversial issue and confuses and divides dr.s making life very difficult for us

    we need to stand together as one with peace love and goodwill and understanding of how brain fog and the cdc can confuse or misdirect even me/cfs patients who are not yet in the know of the scandalous and shocking neglect and harm that is being done to our community

    there is so much good research coming up now i wonder if there is going to be a states think tank like we have in europe which would be great the european one is set up for dr.s by scientists with the specific purpose of educating dr.s to enable them to treat their patients

    i know linda you are a fan of the whittlemore peterson institute so this may be something that happens if they get funding for the new institutes for treatmetn and research.

    if we try to run up the mountain we will collapse and fail but step by step one foot in front of the other we will make it i believe.

    we must always make sure our anger is channeled in constructive directions.

    peace love and goodwill
  8. AuntTammie

    AuntTammie New Member

    thank you for all that you wrote said it well - far better than I did apparently : ) anyway, I appreciate what you wrote
  9. Spinetti

    Spinetti New Member

    are available to order, or to download, at:

    A comparison of the Canadian guidelines with the CDC's "Toolkit" is interesting.

    If the CDC were really interested in helping US doctors diagnose and treat patients, they would have adopted the Canadian Consensus Document years ago.
  10. gapsych

    gapsych New Member

    Simpsons, thank you for your level headed post. Very, very good points.

    Spinetti, thank you for coming up with an alternative site that provides very good information. Somehow, it skipped my mind.

    Yes, it would be great if we could adopt the Candian Consensus Document.

  11. skeptik2

    skeptik2 Member

    See, what happens is, the 'newbies' come here and they have done some
    research at the CDC...well, that's good, they are trying hard to find some info
    to help themselves.

    So you all, and gap, too, have helped them...

    Giving the oslersweb dot com website and the WPI and the Canadian Criteria
    are the way to go..

    Let's keep educating the newbies; they can't help it, we were all there, too, once upon a time.

    BTW, the lawsuit idea vs the CDC is languishing, with the person who said she would help not getting back in touch. She is sick, too. So, I have volunteered to help with the fundraising for the WPI, in Reno, just yesterday. I feel they are our hope for the future if the NCF does not fulfill their promises of having answers for us soon.

    Newbies...we love you, and want the best for you. Many of us have been ill for 10,15,25, 30 and learn, ok?

  12. simpsons

    simpsons Member

    hi you should try getting in touch with hummingbirds australia jodi, i know she is interested in human rights issues always and may have some idea's. its good if we get together on an international basis and check out what others are up to, been ill myself with family and friends having cancer and having to use at lot of my energy with them.

    i think we need to know where we want to go and whittlemore peterson annette is a wonderful woman with good business skills and pr experience and its great that you are working with them

    it seems an impossible task but remember martin luther king i have a dream. i was just thinking about him the other day and how that must have seemed like an impossible task to him but he believed in his dream to change,

    we too must dare to dream.
  13. skeptik2

    skeptik2 Member

    so good to hear from you.

    Poor dear, friends and family with cancer; well, be heartened, I've had
    it twice and beat it!! And that was years ago; they have so may new and
    improved treatments now, have hope! Your loved ones are lucky to have
    your support, they need that so much.

    As to jodi; of course she is marvelous and so brilliant. However, I feel it
    is essential to tackle the CDC from the U.S. They are influencing the rest
    of the world, and are the root of the problem, so I think they must be the
    target, if at all.

    Not only annette at WPI, but my bet is on judy mikovits...a cancer researcher
    now astonished by petersen's finding of mantle cell lymphome in 33% of his
    patients!!! This IS astounding, and mikovits is the one who can zero in on this
    devastating fact. She has already developed the assays to do the testing that
    needs to be done. She is a whiz! The NIH won't be able to ignore her findings
    I believe. She also gave her personal cell phone and
    email addys to us....

    DID ANYONE CONTACT HER? I'd love to know what she told you, if so.
    I now can't find the thread where she did that; anyone know?

    simpsons, take care of you...we who are sick understand when others are,
    and often take on more than we should, but I wouldn't have it any other way
    when my loved ones lives are in danger...

    The WPI hasn't answered my email; maybe they don't need the skills I listed,
    or I misunderstood what they needed. If they need me to work in my city putting a fundraiser together, I wouldn't/couldn't in my city. They are in the CDC's back pocket and in the dark ages about M.E.

    Many hugs, lots of support to you....
  14. skeptik2

    skeptik2 Member

    dot com!

    Judy Mikovits gave out her personal email addys and phone number
    on Hillary Johnson's site! That is truly amazing, isn't it?

    Guess they will be signing up people to be seen when the new clinic
    opens? I hope so! Will be calling to see if I can get my grandau to Reno!

  15. simpsons

    simpsons Member

    dearest skeptic2

    thank you for your kind words and its so encouraging that you have beaten it twice now. i will tell them your story to give them hope
    i wondered if this would be of interest to you in your research on human rights. do write to jodi though and ask her what she has in mind as you know she looks at things on an international level and may have some research already that may help or give you direction

    guess we all needed a rest after such hard campaigning.

    interestingly enough i have polymorphisms that lead to an increased chance of breast cancer although it is a slight increase i am still aware of the risk as my grandmother and great grandmother has cancer though later in life like seventy six and eighty six so i try not to worry

    wpi is a great cause to follow. i spoke to judy at invest in me conference nad she asked about virus...s i had through my life and said it was prob the measles chicken pox glandular fever (mono_ hep a that were my problem combined wth the vaccinations and the virus i got after an op that had knocked my immune system

    i wonder about the chicken pox as sofia mirza and anther autopsy report of badly ill ME patients were found to have this reactivated in their spinal cords. i had the paper that showed the herpes virus's that she had found will try to email it to you when i get the chance to. i wonder that many cancers that we don.t yet know what causes them are virus based and that virus.s are not taken seriously by dr.s who are sticking to infections mainly. you should see the figures in the uk where people are frightened to go into hospital for fear of dying from one of these virus.s. i was at my local board meeting for health authority when they were talking about this and in the paperwork it stated that they knew that antibiotics could start the infection up in the stomach.


    Policy on Environmental Sensitivities

    Individuals with environmental sensitivities experience a variety of
    adverse reactions to environmental agents at concentrations well below
    those that might affect the “average person”. This medical condition
    is a disability and those living with environmental sensitivities are
    entitled to the protection of the Canadian Human Rights Act, which
    prohibits discrimination on the basis of disability. The Canadian
    Human Rights Commission will receive any inquiry and process any
    complaint from any person who believes that he or she has been
    discriminated against because of an environmental sensitivity. Like
    others with a disability, those with environmental sensitivities are
    required by law to be accommodated.

    The CHRC encourages employers and service providers to proactively
    address issues of accommodation by ensuring that their workplaces and
    facilities are accessible for persons with a wide range of

    Successful accommodation for persons with environmental sensitivities
    requires innovative strategies to minimize or eliminate exposure to
    triggers in the environment. These may include: developing and
    enforcing fragrance free and chemical avoidance policies, undertaking
    educational programs to increase voluntary compliance with such
    policies, minimizing chemical use and purchasing less toxic products,
    and notifying employees and clients in advance of construction,
    re-modeling and cleaning activities. Such measures can prevent
    injuries and illnesses, and reduce costs and health and safety risks.

    For further information on environmental sensitivities, click on the
    following Commission publications:

    The Medical Perspective on Environmental Sensitivities

    Accommodation for Environmental Sensitivities: Legal Perspective

    Policy approved by the Commission on June 15, 2007.
  16. skeptik2

    skeptik2 Member

    Those polymorphisms would scare me, too!

    My grdau had a lump that was supposedly benign, fluid, at age 21 (this year), and her
    dr. told her she had to be vigilant for br. ca. the rest of her life and she has to take
    5,000 IU Vit. D. daily. She was in another state far away; I brought her to live with me,
    as she has no health ins., no money, etc. So am applying for SSI for her right now.
    Dx'd at age 14, never worked, so no SSDI.

    Ok, ok, I will emai jodi...even though I don't feel an international effort can be focused
    enough; again, it's like preaching to the choir. Only PWCs really go to the ME sites, or maybe family members or friends of PWCs. We can never seem to muster
    enough energy among us, and I feel it will take a massive effort from real legal
    talent to do anything to stop the CDC's machinations.

    I'll see what she has to say. Am really worried about Jean Harrison; not one word
    after several emails. I truly hope she is ok.

    I don't get the significance of the 'environmental' subject you threw in here; maybe cuz it's 4:30 a.m. and I have to be up by, nite nite...