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First IOM meeting scheduled - Jan 27-28

Discussion in 'Institute of Medicine (IOM) Government Contract' started by medfeb, Dec 26, 2013.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree that simply changing the name, without more, will never fix our issues, but it will help somewhat, don't you agree? Since it won't fix all our problems by itself, we obviously need to do other things too, but I've never suggested that we only rely on name-change to fix our problems.

    And it is the positive change that is most in our control and costs no money from us and relatively low effort to influence its change (by using the term ME and not "CFS" and asking other to also), so we might as well do it.
     
  2. Ember

    Ember Senior Member

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    Are those CFS (Fukuda) patients who don't meet your definition of atypical ME to be left "in the lurch?"
     
    taniaaust1 likes this.
  3. taniaaust1

    taniaaust1

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    Yes I do agree with that some.. I think it would help others who arent in the medical profession stop putting just the fatigue thing onto us.. but on the other hand I do not think it would help much as far as drs etc go as they will just see as us CFS patients still but with just a new name. It see that as not doing much more then sticking a bandaide on a sore which just keeps bleeding.

    That part about costing no money with the name change may not be be true. It would mean that our associations etc need to change their names and this due to new letter heads and I guess they may need to register new names etc etc may cost money.

    I wish I thought things were as simple as just changing a name.

    I too wonder what you propose for the "CFS" patients who dont have post exertional symptoms but still have more then "idopathic fatigue" which is just fatigue alone.. it would be wrong and cruel to say they have just have idopathic fatigue (sure many of those may be wrongly diagnosed but I wouldnt be suprised if there is a group of undiscovered illnesses out there in which people dont fit atypical ME (if going by just postexertional symptoms) but have more symptoms then idopathic fatigue.

    The whole ME/CFS thing I see as hugely complex and hence why I dont think that non ME/CFS experts on things like the OMI panel is a good idea at all.
     
  4. Delia

    Delia Senior Member

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    I just gave this to my doctor today, to help me get the ME diagnosis, and the ability to bill it.

    http://www.masscfids.org/resource-library/8-diagnosis/456

    I hope I wasn't wrong in thinking it would help.

    I would like to raise awareness so that people can know about this, if indeed it will help them.

    I have the best doctor I could find in my doctor rich-medical school city: doctors who all treat cfs patients terribly and according to the CDC toolkit, if at all. She's been the most knowledgable I could find, but even she didn't know what the hell ME was.
     
  5. Delia

    Delia Senior Member

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    I believe the term ME/CFS came about in 2003. I got sick in September 2005. I still can't find any doctors within 500 miles of me that even know the term ME. Or ME/CFS. 8 years after I got sick and ten years after they were put together. (Put together for imperfect reasons)

    Is anyone helped medically by a diagnosis of CFS?

    Is anyone helped getting support with a dx of CFS? It still doesn't help get social security in the US, even though legally it's been a coverable disability since 1999. It's still nearly impossible. And as far as I know, Social Security Administration standards/criteria have not been updated since then. But I can't speak for other countries.

    Disability Insurance from employers already made a deal to only cover two years for CFS (if I recall correctly, I have bad brain, and an incredibly bad news day-my doctor is moving away. And I went through hell to find her)

    We have a fight on two fronts: 1) lay people and that includes politicians and doctors! As well as family, friends, and general public.

    And 2) the science.

    Our first fight is the lay fight. The letter to the IoM by Gabby, I believe, iirc, said it best: even people closest to her did not fully realize the seriousness of her condition before these documentaries' (one or both? I forget) short videos came out and she could share them.

    They contain our most powerful message.

    The experts letter supports this message.

    This is The message we need out FIRST.

    The second fight is scientific, but we will never get to make those cases, for all of these concerns, because we will never stop, or bring outside questioning on the validity of the IoM report WITHOUT lay people support. Or even just the recognition that we can get their support, by those in power.

    That's the biggest, most pressing harm.

    By sticking with the messages that lay people understand, without devolving into arguing over the higher level concerns (that rightfully can only be addressed if we get non ME literate people on board to help us get some real science) we have a real shot.

    We had a strong message.

    Now we don't.

    Can we figure out a way to deal with an imperfect message (to all of us) that very effectively gets the job done with lay people , does no real harm, gets us some respect for the seriousness of our conditions and is a message that can be clarified to be more specific as we move forward from step one?

    To use a quote from Mad Men: there's a snake that can go weeks or months without anything to eat. He comes upon some prey and eats it all in one bite. It chokes him and he dies. The moral: one bite at a time.
     
  6. Delia

    Delia Senior Member

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  7. Ember

    Ember Senior Member

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    Myalgic encephalomyelitis: it's a disease suffered by a subset of patients diagnosed each year with chronic fatigue syndrome.
    Myalgic encephalomyelitis; it's a disease.:zippit:
     
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    No. I said above:

     
    Delia likes this.
  9. Ember

    Ember Senior Member

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    Small comfort, I should think! When should CFS (Fukuda) patients who don't meet your definition of atypical ME expect to see results from such efforts?
     
  10. Andrew

    Andrew Senior Member

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    Some research by Leonard Jason and others found that medical students take CFS more seriously if it has a different name. They also take it more seriously if it has a new name and are told that it used to be called CFS. IOW, changing the name helps, regardless of whether it was previously called CFS.
     
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  11. Ember

    Ember Senior Member

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    Does Dr. Jason recommend exchanging a CFS diagnosis for a CF diagnosis? He's promoting an ME definition that characterizes post-extertional malaise as “prolonged restoration of muscle power following either mental or physical exertion” and excludes gradual onset patients:
     
  12. Snowdrop

    Snowdrop Senior Member

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    I've just started reading from the first post and made it this far. You've pretty much expressed what I've been thinking as I read.

    There really is no such thing as CFS. There is chronic fatigue as a symptom that can be experienced by a variety of illness sufferers (sorry, clumsy way of saying that). But it is most definitely NOT a syndrome by itself as the only symptom or more ridiculously with added symptoms. It just makes no sense.

    I'm not sure that the term ME correctly defines what I have clinically that's making me ill but until research clears this up it will have to do.
     
    Delia likes this.
  13. medfeb

    medfeb Senior Member

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    Ember
    I don't see anybody recommending exchanging a CFS diagnosis for a CF diagnosis or throwing all the "CFS", non-PEM patients under the bus. The point that I hear people saying is that the various "CFS" criteria collectively include a diverse set of conditions. This has been proven over and over. Scientists can not make progress studying a cohort of patients whose single shared criteria is chronic fatigue and whether their condition has a medical explanation. That's what the collective "CFS" criteria do and it hurts every patient - no matter what their condition.

    At the May CFSAC, Dr. Fletcher described this situation as it impacts patients who meet CCC but it applies to all the other patients that get swept up in CFS
    " to do the research [to find biomarkers], we have to be able to identify patient populations that are the same. We need these complex case definitions [CCC, ME-ICC] now, not in two years or four years. With those tools we can compare one group to another. That’s why I’m really interested in case definitions. Fukuda’s not going to do it."

    Note the context of her calling CCC and ME-ICC as complex was because someone, I think Dr. Lee, had said the CCC was too complex for doctors to use.
     
    Delia likes this.
  14. Ember

    Ember Senior Member

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    For CFS (Fukuda) patients who don't satisfy an atypical ME diagnosis, what consequence do you see arising from your position: “As a clinical entity, 'CFS' needs to go?” With neither an ME nor a CFS diagnosis available to them, won't they be diagnosed with CF instead, thus finding their current CFS diagnosis exchanged for a CF diagnosis?

    The International Consensus Panel writes, “Whether patients with less severe conditions represent a continuum, faulty diagnosis or different disease entities can only be determined by future studies.” How long do you expect such patients to wait for more favourable treatment?
     
  15. Nielk

    Nielk

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    The history of chronic fatigue syndrome shows that it's name was created by the CDC in 1988 following their 'study' of the Lake Tahoe outbreak. The disease was first known as 'chronic ebv'. But, when the CDC representatives did not see any evidence for that, they decided to name it CFS.

    Therefore, I don't think that it is accurate to say that CFS does not exist. The outbreak there showed a disease pattern. The CDC wanted to whitewash it so they gave it the ridiculous name CFS and then they proceeded to describe it in ridiculous vague terms. What the CDC did to this disease is a travesty. Do we need a name change? Absolutely! But it doesn't mean that a serious disease does not exist. It does - it just has a ridiculous name and is currently totally misrepresented by our government........25 years later still.
     
  16. Delia

    Delia Senior Member

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    Ember,

    With all due respect, what CFS patient receives favorable treatment now?

    And I have to reiterate the difference between an advocacy/activist strategy to get to the table: a REAL table where all these differences can be sorted out with scientific integrity, we first need an activist strategy that is working. That works.


    Otherwise we're just rearranging deck chairs on the Titanic, by arguing about second tier concerns when first tier concerns have not been prioritized. And actions decided.

    I respect you tremendously, I have since I've gotten on the forum. In fact, I would want you 100% on the round two team. You have so much knowledge that will be imperative when we turn that corner.

    I am operating at a different stage in the game: the part that gets people like you to round two.

    It's been said from the beginning: nothing short of an Act-Up type response will help us.

    (We don't have to throw blood or do what they did:we just need a strong organization, and a relatable message, and then a plan of action(s)

    I can help with that. This is my wheelhouse. What you know, is not my wheelhouse and and I readily admit this. I have since day one. All of you wonderful, knowledgable advocates!

    You would never want me to make the science and history arguments.

    Another way to put it: most elected officials or organizations have "policy wonks" that know all the indepth information. But the messages are turned into laymans terms and the messenger:the elected official or face of an organization is the person who connects well with people and with a relatable message.

    There are exceptions: Bill Clinton, for example is both a wonk and a messenger. (I'm not putting a value on him, just describing)

    I'm an organizer. I'm a message person. You would want me (or someone like me) to help create an organizational structure for a movement, you would me want me for outreach and grassroots organizing, you'd want me to help create a message that connects to lay people.

    To move forward we have to deal with tier one or round one concerns.

    We have to find where to draw lines in the sand with each other and where not to.

    In the civil rights movement that was nonviolence. That was non negotiable. I don't know if they had much else.

    But we have made tons of lines in the sand with each other, and it's more damaging to us than the CAA or the IoM.

    We have to be able to live with imperfection.

    The Montgomery Bus boycott went on for about a year, iirc. Did that get all that they needed? Did it articulate all the needs of the Civil Rights Movement? Not at all. It was round one.


    Do you want a movement?
     
    Last edited: Dec 31, 2013
  17. Delia

    Delia Senior Member

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    I should clarify! What you say is exactly what I meant by not existing! By making up that name in the face of real ME they created something that doesn't really exist (CFS) to hide the illness (ME) that does exist!

    I've been just, very badly I think, trying to say, if we say it's a subset, it only became a subset, because they allowed their name CFS (created in response to ME) to exist in order to gather other conditions over the years to give it legitimacy it doesn't deserve. And delay real medical, auxiliary and research help.

    And they've gotten away with it for thirty years.

    So much so, CFS is 1000 times more known than ME.
     
    Nielk likes this.
  18. Delia

    Delia Senior Member

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    Yes!

    As do hairdressers, employers, co workers (fir those who can work, or could use to work) grocery store clerks, (to help with groceries to the car) police officers (I have had the police called on me when trying to buy a dress for a wedding because the store clerks thought I was drunk because of my balance and cognitive difficulties...

    Family, friends, Everybody takes anything more seriously than Chronic Fatigue Syndrome.
     
  19. Delia

    Delia Senior Member

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    I answered in another post, another person misunderstood me on this point. I must have not been explaining myself well.
     
  20. Ember

    Ember Senior Member

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    You seem to be saying that “first-tier concerns” (which I take to be those of advocates opposing the IOM study) are in disarray. This thread, as I understand it, is addressing the “second-tier concerns” of those who have chosen to engage the IOM study.

    Imperfection, to my mind, shouldn't involve undermining our experts, censoring Jen Brea (our communicator par excellence) or risking the welfare of others. Lobbying to have ME patients removed from the broader category of CFS, while pressing for a name change, might be seen as “imperfection.”

    With all due respect, ME patients don't receive favourable treatment now, yet many covet that diagnosis while dismissing the cost should others unfortunately lose theirs.
     

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