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Now that CFSAC's over, what should we do?

Discussion in 'General ME/CFS News' started by Sasha, Jun 15, 2012.

  1. rlc

    rlc Senior Member

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    Hi Bob RE your list of suggestions, here is my views

    1. Promotion of CBT and GET as therapies for CFS patients should be removed from CDC literature, toolkit and website.

    No, the entire CDC information on its site should be removed because it is all scientifically and medically faulty, and only promotes the Psychiatric disease CFS, which has nothing whatsoever to do with physically ill patients!!! All ME research should be moved to a different government body, because the CDC has spent the last 25 years proving that they are incapable of doing it! And recent statements from the CDC that their plans for the future is to compare the Fukuda definition, which the majority of the writers were psychiatrists and defines CFS in such a way that it can only scientifically be seen as a psychiatric, with the Wichita study in which they did such minimal testing to rule out other diseases that it can only of been done on mixed cohorts. Shows that the CDC doesn’t have a clue what it is doing or is deliberately doing it badly and should not be allowed to do any future research.

    2. The IACFS/ME toolkit should be promoted and adopted by the CDC.
    http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf


    No the testing and list of diseases to rule out is not complete and should not be used until it has been fixed, the term CFS/ME should not be allowed because it associates the psychiatric disease CFS with the physical disease ME, it’s like saying someone has schizophrenia/ cancer which is medically nonsensical, because what it says about what the symptoms are, is based on a list of tests that will NOT rule out all other diseases, it is more than likely faulty. So we shouldn’t be encouraging doctors and patients to see what the IACFS says as scientific facts, we should be aiming to get scientific replicated studies done on patients that have had ever other disease ruled out, as I have just outlined to Floydguy, we can then put out scientifically correct information on what ME really is instead of running the risk that what the IACFSME says in wrong and cause more confusion.

    4. The CCC and ICC should be used alongside Fukuda for all future government-funded research.
    Ask the CFSAC to recommend that either the CCC or ICC, or both, are always used in government funded research into CFS or ME/CFS or ME.


    No waste of time, the CCC and ICC wont be accepted because they are based on Clinical experience, not replicated scientific facts, the ICC writers have not as of yet said what testing they recommend, but the CCC recommends testing that is faulty so it will be based on mixed cohorts, as the IACFS/ME is. We need replicated studies of a pure cohorts done and a new definition written on scientific facts not clinical experience so that no one can argue against it ever
    .
    5. More research funding for the biomedical model of illness, using CCC and ICC for all research.

    More research funding yes, CCC and ICC no, first do replication studies on pure cohorts so we know exactly what is being studied first, then fund research into it.

    6. Research trials be carried out into Rituximab, and related pharmaceuticals, using CCC and ICC cohorts.

    No, the Norwegian researchers are not relying on definitions, but from what I’ve read they are absolutely fastidious about ruling out all other diseases because they know if they don’t they will kill people, if either CCC or ICC are used without ruling out all other diseases people will die.

    7. CDC creates a comprehensive list of differential diagnoses, and the tests needed, and makes this compulsory for all potential CFS patients, and all CFS patients, to receive.
    As per the IACFS/ME toolkit?
    http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf
    As per Hummingbird?
    http://www.hfme.org/misdiagnosis.htm#397044121


    Create a comprehensive list of differential diagnose and the tests needed and make it compulsory for all, 100% YES this is the most important thing that is needed and nothing else will work until this is done. But IACFS/ME and HFME are far from complete and a complete list will have to be written. Due to the CDC proven track record of total incompetence on this issue, I don’t think that they should be the ones responsible for it!

    8. A series of state-of-the-art specialist ME centres are set up across the country, which offer biomedical investigations and treatment, and do not follow the biopsycosocial model of illness, and which do not offer GET or CBT.

    Once replication studies are done to prove scientifically what ME is, then specialist centers may be needed, but the most likely outcome is that we would end up with doctors in hospitals who specialize in it, and patients can be referred to them, of course there would be no psych crap, because the process of ruling out all other diseases would also rule out all psyc diseases.

    9. The CDC should stop using the 'empirical' definition for research.

    No the CDC should stop using all its definitions for research, because they are all unscientific and not based on replicated studies! i.e. they are crap and say that CFS is a psychiatric illness. the CDC with its terrible track record should not be researching this conditon!

    10. The CDC should remove all information from their website based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS.

    Same answer as for number 2, the CDC should take down its CFS website, and all research should be moved to another government body.

    11. Give CFSAC power to educate physicians, schools, social services, and the public itself, and the funding to issue press releases.

    No, until replication studies have been done on pure cohorts it is impossible to put out accurate information. We have to do things in a proper scientific manner replicated studies first.

    12. Invest research funds into finding a biomarker or biomarkers for ME.

    Yes do scientific replicated studies as outlined on pure cohorts.

    Relating to the new CDC diagnostic criteria:

    13. The CDC should develop a definition based on the biomedical model of illness.
    That the CDC creates a meaningful criteria based on patients with a biomedical illness, and to exclude pyschological or psychiatric illnesses from the definition.

    14. For the CDC to engage with the patient community when creating its new diagnostic criteria.

    15. That the new CDC criteria be subsetted in order to create more selective cohorts, including a cohort identical or similar to the ICC.

    16. Ask the CFSAC to ask the CDC for exact details of their diagnostic criteria project.


    The CDC has no intention of admitting that they have done nothing about ME for the last 25 years, Dr Unger has already outlined their plan and it is a farce!!! The CDC should not be allowed anywhere near this disease and all research should be moved to another government body.

    17. The CFSAC should review all their past recommendations and to re-recommend them where agreed.

    All the CFSAC needs to do is recommend that a complete differential diagnosis list is created with all the tests to rule out all other diseases, and that replicated studies are done on pure cohorts to find scientific facts about this disease that can be used to create a new definition, and hopefully diagnostic tests, cures and treatments. Oh and it needs to change its name CFS is a psychiatric illness!

    Sorry bob looks like we only agree on a couple of things, but we do agree on the two essential points which are the only ones that matter!

    Create a comprehensive list of differential diagnoses and the tests needed and make it compulsory for all, but this has to be 100% complete not like the IACFS/ME one or HFME, and I don’t think the CDC should be allowed anywhere near it,

    Invest research funds into finding a biomarker or biomarkers for ME. Yes starting with replicated studies on pure cohorts to find out what ME is for certain so we have scientific proof of this, so we can tell the psyc lobby to stick it where the sun don’t shine! And can get on with proper research.

    Just doing these two things will solve the entire problem. All the misdiagnosed will be found and treated and we will have pure cohorts, then properly funded research on the pure cohorts should unravel the mystery of ME very quickly. And we can all get cured and get on with our lives.

    All the best
  2. Bob

    Bob

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    Thanks for the feedback rlc. You've only got some very minor objections then, I see! o_O :confused: :eek: ;)

    OK, we could advocate for the scrapping of Fukuda, or better still, the scrapping of the CDC, but realistically, the CDC are only going to make incremental changes, under pressure from advocacy groups, if any.

    I think that we have to face the fact that we currently have a deeply unsatisfactory situation and work to change it in the most effective way we can, and so this might involve suggesting incremental changes. IMO, incremental changes are better than no change. We can only nudge them in the right direction, we won't be able to make massive changes.

    And I think we have to address CFS, as the CDC currently understands it, and not just ME as we understand it.

    Would you not be willing to accept suggestion no 1. as an interim step, to improve the situation, with a long term view of scrapping all CDC involvement in CFS or ME? Suggestion no. 1 does not contradict your suggestions. We could even say that it is an interim step until better diagnostic criteria are used.

    We could certainly suggest that CFS or ME research should be moved to a different government body, but that won't happen because the CDC is in charge of overseeing this kind of thing, and that's not going to happen without the US government or parliament making changes to their whole system. I think we've got to set our sights a little lower for a realistic outcome.

    I'm not sure if I can extract your exact suggestions/recommendations from your text, above... If you want to provide any, then please do... But this is what I got; would you want them included?:

    1. All ME research should be moved to a different government body

    2. Scrapping of Fukuda, in favour of a diagnosis that defines ME.

    3. Declare that the CDC's Wichita study was flawed and irrelevant to ME patients, as it included mixed cohorts.

    4. Promotion of CBT and GET as therapies for CFS patients should be removed from CDC literature, toolkit and website, as an interim step towards removing all information based on fukuda.


    Do you not think that they current situation is worse that it would be using the Toolkit?
    Again, would you not be willing to include that as an interim step, and an incremental improvement?
    We could even state our preferred long-term outcome, and suggest the toolkit be used as an interim step.

    So my challenge to you is to come up with some succinct (i.e. no more than a short paragraph, with references) appropriate wording for what you want to see.




    We can certainly make a suggestion about creating the purest cohort possible.
    Would you like to give me the wording?

    But if we don't use CCC and ICC, then we are left with Fukuda. Surely, using more selective criteria is better than just using Fukuda? Even if they won't accept that recommendation, it still tells them what we want, and what we are thinking, so I don't believe that it is a waste of time, even if it won't be accepted.

    Give me your response please.

    We can certainly include a suggestion along the following lines, if you can provide better text, and explain how it should be acheive:
    "We need replicated studies of a pure cohorts done and a new definition written on scientific facts not clinical experience so that no one can argue against it ever"









    What is a pure cohort? We don't have any. So please provide a practical suggestion.
    Again, are CCC and ICC not practical interim steps, moving us in the right direction?
    It's starting to look like you only want Fukuda to be used, because that will be the medium-term result of your way of doing things.



    Well, they have to start with a definition, don't they, or they would not know who was an ME or CFS patient.
    But we can include text about safety, if you have a citation for it.



    So, how about:
    "Create a comprehensive list of differential diagnose and the tests needed and make it compulsory for all, using IACFS/ME and HFME as a starting point"?





    Yes, I don't realistically think that adequate centers could be set up, for many different reasons.
    But would it harm us to include this suggestion anyway?




    I think your wording needs to be refined a little. For example, I can't include the word 'crap', as much as we might like to.
    We can keep item 9. and then include a new item, which you can provide the wording for, which will suggest getting rid of Fukuda.




    OK, i'll look for your response to my questions for item 2.




    Again, it's an all or nothing situation. At the moment we have nothing, and you only want to see a perfect situation. We are only going to get incremental changes, so your approach will lead to the status quo, IMO.
    But we could include item 11., with a proviso that this is a suggestion for an interim measure until further research is carried out.




    Research needs to be carried out on all cohorts, and we don't have 'pure' cohorts, and it's the research that will find them. For example, it is the biomarker studies that may well find us the cohorts that you are talking about.




    OK, those suggestions can be included in the list, if you give me the wording.



    I'm not sure. I don't disagree with a lot of what you say. But I don't agree with your all or nothing approach. It's unrealistic.
    Also, you don't disagree with the direction of my suggestions, it's just that you want to see an absolute change, rather than by degrees.
    If you could reconsider, based on my questions above, then that would be helpful.



    Again, please give me the wording - precise and clear, with references if necessary.

    rlc, please keep your answers short, concise, and to the point, because it's difficult to work through large chunks of text.

    You seem to be wanting to jump from an utterly imperfect world, to a perfect world in one step. It's not going to happen, so IMO we need to create suggestions that will move us in the right direction.

    I'm not going to scrap any of the items yet, until you have given feedback to my responses and questions.
    floydguy and CJB like this.
  3. Bob

    Bob

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    BTW, rlc, if you want to quote somebody's text, you paste the text into your post, select the text (highlight it with your curser), and then click on the " symbol (it looks slightly different to that, but it's the quote marks) at the right-hand-side of the options above your text.
  4. floydguy

    floydguy Senior Member

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    I hope in the end we can agree on no more than 5. Any more than that is too much. This committee has proven they can't walk and chew gum at the same time.

    I really don't think it's a great idea to scrap what the CDC is doing with ME. That doesn't seem realistic. The goal really should be to minimize their damage and shine a light onto their unscientific methods. Attacking the "beast" with a slingshot is hardly going to have an effect.

    ME Clinics aren't practical at this point. I agree with Bob on "pure" cohorts. I still like the idea of samples coming from a selected list of ME Clinicians who have already run tests so they know who has immune dysfunction who has infections, etc.
  5. Bob

    Bob

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    Yes, I agree with you on that, floydguy... I just made a list of everything that had been brought up...
    At the end of the process, I think we should vote for our top items... Five seems like a good number to take forwards.
    If anyone has any alternative ideas for this process, then please let us know.

    Agreed. The CDC is hardly going to make big changes because we make a demand, or the CFSAC makes a recommendation. But we can certainly highlight the CDC's lack of scientific rigour, and explain why we are not happy with their approach to CFS or ME.

    Agreed. Does that mean we should remove that item? If it's not on the top of our priorities, then I suppose we could remove it anyway?

    Yes, it's only by researching the current mixed cohorts, that we will be able to ultimately distinguish 'pure' cohorts.
    I think rlc might mean that a 'pure' cohort is one in which all differential diagnoses have been ruled out, but I'm not certain what he means.
    But even in that case, we still can't be certain that that would create a 'pure' cohort until we have biomarkers etc.
  6. Ember

    Ember Senior Member

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    Though I like this suggestion in some ways, I wonder what the CDC will do with it. Are we asking for a competing ME case definition? (Could everyone be better served by another broad CFS definition for patients who don't meet the more restrictive ICC or CCC?)

    Mary Schweitzer asked in her testimony “Why isn’t there an MEAC - Myalgic Encephalomyelitis Advisory Committee?” Along the same line, we could be asking: “Why isn't there a CDC listing for ME?”

    Of course, ric's suggestion is more dramatic: “By pass the CDC and go to other government agencies and the press, and tell them we want ME accepted as a real physical illness as it is by the WHO and for research to be funded....”
  7. Bob

    Bob

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    Yes, I was thinking along the lines of a competing (or 'complimentary') ME diagnostic criteria, or case definition, from the CDC.

    Yep, we could put forward some suggestion about 'ME' being recognised as a distinct disease, and then lay out how it should be defined. It might become a bit complicated trying to word it in a way that we are all happy with, and I'm not sure if that will pass the consensus test for this project, but we can add it to the list and see.

    In practise, using the ICC for all research would add 'ME' to the CDC's world anyway.

    Yep, we could make that a suggestion as well.

    If you want to turn these into suggestions Ember, then please do, and we'll add them to the list.
    They don't have to be well crafted/worded at this stage, so a simple sentence or two will do for now.
  8. Ember

    Ember Senior Member

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    Here's my suggestion then: CFSAC should recommend that the CDC add myalgic encephalomyelitis (ME), as defined by the ME-ICC and classified by the WHO, to its list of diseases.
    Do you have any reservations about this suggestion?
  9. Bob

    Bob

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    Thanku, I've added it to the bottom of the original list:

    "18. CFSAC should recommend that the CDC add myalgic encephalomyelitis (ME), as defined by the ME-ICC and classified by the WHO, to its list of diseases."

    Others should comment on this added item, if they have an opinion about it.

    Yes, I do have reservations, because the CDC will probably mess up anything that they work on, and then they would try to promote their own criteria for 'ME', over and above the ICC, so it could end us up in a worse situation.

    However, it might also work out for the best. I don't know. If it's just for research, then I think that any criteria that are more selective would be of more use than Fukuda.

    So do we suggest asking the CDC to work on a more selective set of criteria or not? They could mess it up, or it could help. Or they could mess it up but it would still be a better situation than we have now.

    I wasn't sure what you were getting at in your previous post though, Ember... I didn't understand what you meant by: "Could everyone be better served by another broad CFS definition for patients who don't meet the more restrictive ICC or CCC?"
  10. Ember

    Ember Senior Member

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    Sorry, Bob. I was thinking out loud...trying to be careful what I wish for...and asking myself the question, “So do we suggest asking the CDC to work on a more selective set of criteria or not?”
  11. jspotila

    jspotila Senior Member

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    Oppose: There is no point to asking for this, in my opinion. The ex officios were quite clear at the meeting that the government will not adopt or promote or endorse guidelines authored by an outside organization except through guidelines.gov, and even that requires passing an editorial review.

    Oppose: Centers of Excellence have already been recommended by the CFSAC mutiple times.

    Opppose: CFSAC already made this recommendation.

    OPPOSE: Please, please remove this item. It is impossible. The CFSAC is governed by the Federal Advisory Committee Act. It has no powers to issue press releases or educate anyone. This cannot be accomplished. Asking for it just shows that we are either pie-in-the-sky dreamers or ignorant of how an advisory committee is obligated to operate under law.

    Oppose: CFSAC has recommended research into biomarkers, although this thread shows quite some disagreement over whether they've recommended it for ME.

    Oppose: CFSAC already passed a recommendation that the definition be clarified.


    From your mouth to God's ears! I desperately desperately wish the committee would review its recommendations, and fix them! So many are just unclear and poorly worded. However, I recommend clarifying this point: "The CFSAC should review all their previous recommendations for clarity, utility, redundancy, and applicability. Based on this review, and a review of responses received from the Assistant Secretary and Secretary (if any), the CFSAC should re-issue recommendations that address current priorities in CFS policy in a clear and concise manner."
    urbantravels likes this.
  12. Bob

    Bob

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    Yes, it's a difficult one, isn't it! I think we have to push them that way though, or we won't make any progress. We can advocate for using CCC/ICC in research at the same time.
  13. Bob

    Bob

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    OK, I've put a line through this, as it's the second objection, and as it was discussed at the meeting anyway.
    But we could come up with a suggestion relating to the CDC coming up with its own toolkit based on the IACFS/ME's toolkit, or something like that.


    OK, that's the third objection. Deleted.

    OK, that's the second objection. Deleted. But is a repeated suggestion or recommendation a waste of time? Wouldn't it emphasise how important it is?

    OK, thank you for that extra info. This had been discussed, so I assumed that we'd decided that they can do press releases. It's deleted. I doubt if they can change their powers without a bill from congress. So congress should be lobbied for that!

    Can we not suggest research into biomarkers using CCC and ICC?
    (Will await your response before deleting)

    Can we not ask to get it re-recommend, based on more targeted wording re the wording in item 13?
    (Will await your response before deleting)

    Excellent. I've replaced no 17 with your wording.
    Others should comment on this if they have an opinion.

    17. The CFSAC should review all their previous recommendations for clarity, utility, redundancy, and applicability. Based on this review, and a review of responses received from the Assistant Secretary and Secretary (if any), the CFSAC should re-issue recommendations that address current priorities in CFS policy in a clear and concise manner.
  14. medfeb

    medfeb Senior Member

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    Could I ask for clarification on what you mean by 'the CDC list of diseases". Is there a specific list beyond ICD that you are thinking about in this recommendation?

    I ask because my understanding is that the U.S. bases its list of diseases on the WHO's ICD and that that list is used across all of DHHS and with insurance, etc. Currently the U.S. uses ICD-9-CM with ME listed under Nervous System diseases. In WHO's ICD-10, both ME and CFS point to G93.3/Post Viral Fatigue Syndrome in the neurological chapter of ICD-10. The version of ICD-10 (ICD-10-CM) also has ME at G93.3. (Currently CFS is not but CFSAC and Coalition 4 ME/CFS recommendations are for that to be reclassified back to neurological).

    Assuming that the CDC already has ME is 'its list', are you asking to have the term ME used for those patients that meet ME-ICC criteria?

    The Nov 2011 CFSAC recommendation for classification of CFS, which Klimas voted on, might be helpful (extract given below). I am not trying to argue one way or another or open up the discussion on whether ME and CFS are the same disease or not but think this text is useful to think about in framing this recommendation.

  15. medfeb

    medfeb Senior Member

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    Playing devils advocate on this one - is it enough to recommend that they review all their previous recommendations and clean them up if the resultant recommendations are ignored or not taken seriously? Does this recommendation need to say more or is a separate recommendation needed?
  16. Ember

    Ember Senior Member

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    I was taking more licence than I should have, Mary, when Bob wrote that suggestions don't have to be well crafted/worded at this stage. I knew “the CDC list of diseases” wasn't up to the job. But I can't quickly find the CDC statement on myalgic encephalomyelitis. ME isn't on their website A-Z index, so that's my initial reference. Perhaps someone who remembers our previous discussions about the CDC's position on ME can help me out.
  17. rlc

    rlc Senior Member

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    Hi Bob, I’ll try and state my view as clearly as I can, but first I will try and explain a few things that should hopefully make where I’m coming from a bit clearer, so bare with me.

    The first goal of advocacy MUST be to completely solve the problem as quickly as possible! People are dying!!! For people like you and I whose health is reasonably stable, we can accept waiting five or ten more years for this problem to be solved it will be unpleasant, but it is doable, for thousands of other people this kind of time frame will cost them their lives, both people with ME and people who have slowly progressing un diagnosed diseases who have wrongly been diagnosed with CFS.

    So we need to solve this problem as quickly as possible, if we agree to a slow interim step approach, we are condemning people to death, sorry if this sounds full on, but it is the reality of the situation. And I cannot in all conscience accept a plan that will kill thousands of people.

    For advocacy to work, the goals have to be simple to understand, hit straight at the heart of the matter, and there can only be a small number of goals, or focus and effort will be scattered and very little will be achieved.

    Things that need to be clearly understood before we start are that ME is a disease that has a certain set of symptoms that is not any of the other known diseases that can cause these symptoms! This is the definition of ME! Long term sick with a variety of disabling symptoms that are not caused by any other known diseases.

    So when I say a (pure cohort) I mean people who have been tested for all the other known diseases that can cause these symptoms and don’t have any of them. But are still sick with these kinds of symptoms. That is a pure cohort, if we have a pure cohort there will be nobody with other diseases in the research messing up the results, then we can make progress!

    Everybody needs to understand that CFS is by definition a Psychiatric disease, because it is scientifically impossible to have a physical disease that does not have physical anomalies!

    The writers of the likes of the Fukuda definition have invented a cunning trap, for everyone who tries to research it to find physical anomalies, as soon as any researcher finds physical anomalies they just turn round and say it isn’t CFS, to protect it from ever being found out that CFS isn’t a real disease they have written into the definitions that nobody can be extensively tested, so nobody can prove that CFS is in reality made up of large numbers of people with undiagnosed known diseases and ME.

    So the only way to bust the CFS bubble is to, get people tested for every known disease so that we are left with a pure cohort, and then to research this pure cohort to find out what is going on and find the physical anomalies, when the physical anomalies are found these patients will therefore not have CFS, because CFS patients can’t have Physical anomalies, so it must be another disease, which can be called ME until such time as a new name is invented based on the scientific evidence. When this is done it will prove that CFS has been made up of a large number of people with known diseases that have wrongly been diagnosed as CFS and physically sick people with ME and the myth of CFS will be busted once and for all.

    This is exactly what Dr Byron Hyde has done, but because his work hasn’t been scientifically replicated, the likes of the CDC just ignore his work.

    I’d like to take the time to explain how all diseases become recognized as scientific facts, because it may help people understand where I’m coming from.

    All diseases start with working doctors discovering something new and previously unrecorded in some patients, they then report these finding to higher authorities for it to be investigated, This is step one!

    Then the researchers gather patients with this previously unknown condition and study them, they make sure that the patients don’t have any other known diseases and the doctors haven’t stuffed up and are reporting a disease that is already known, this is step two.

    The research is then collated and studied using pure science and replicated studies, this is step three.

    If the scientific evidence shows that it is a new disease, it is then accepted as a scientific fact based on the replicated scientific research, definitions are written and diagnostic tests and cures looked for. This is step four.

    Step five is, tests and treatments for the disease are found, and the medical community starts using these. End of problem!

    When it comes to CFS definitions and the likes of the ICC, they are all only based on step one, the ICC and other definitions are the opinions of a small group of clinicians, which have not been scientifically independently replicated, so they are not science they are opinions! Step two other independent researchers making sure that all other diseases have been ruled out has not been independently done, so we have no proof that the writers of the ICC have done this properly, we can’t just assume this, because it is not science. The ICC tries to back up its claims by quoting research that has not been independently replicated, so therefore isn’t science! Which makes them look very unprofessional for doing this.

    The reality is that all the definitions are just a collection of meaningless symptoms that could be caused by a large number of diseases, with very bad instructions on how to rule out these other diseases, they don’t actually scientifically define anything!

    The only ME definition we have that science agrees on is, ME is a disease that has a certain set of symptoms that is not any of the other known diseases that can cause these symptoms!

    The reason why steps 2,3,4,5 have never happened is that the likes of the CDC and the UK government refuse to do it.

    But for the ME community to act as if the likes of the ICC is science makes them look silly in the eyes of the medical and scientific community, which doesn’t help, Now I’m not saying that the ICC is wrong, I’m saying it is not proven science, which is a fact! If as Dr Klimas is saying it is possible that some ME patients don’t fit the strict criteria of the ICC turns out to be true, then using the ICC will effectively throw all those people under the bus of the oncoming changes to the DSM-5, which is not something I’m going to support!

    So because none of the definitions are based on the correct scientific process of a new disease coming into existence, and therefore there is a very good chance that they are all wrong! I propose that we do not support the use of any of them, why do we want to use incomplete science? Not only will it not solve the problems, it makes us look silly.

    What we should be asking for is for the correct scientific process to be done for the first time ever in this field, we need a pure cohort created by ruling out all other diseases, there is no point in arguing what the symptoms these people should have, because we haven’t had the pure science yet that proves what the symptoms are. All other diseases should be ruled out, leaving a group of long term sick who have symptoms along the lines mention in all the definitions.

    A group of about four hundred pure cohort patients are then split into four group of a hundred and tested for everything that has previously been found in these patients and anything else the researchers can think of, along the lines of how I described it to Floydguy. The tests in each four groups will be exactly the same so it is a replicated scientific study!

    This information will then mean that we have done steps 1, 2, 3, and 4 of creating a new disease, and a scientifically correct definition can be written that no one can argue with because it is pure science! Then based on this step 5 can be done!

    If we campaign for this to be done we have a high chance of success for the simple reason that it is based on the correct medical and scientific process of defining a new disease, the medical authorities and scientists who see are request, will respect us because we are showing a knowledgeable and scientifically valid way of fixing this problem, If the government refuses to do this and is therefore refusing to follow correct scientific process, then we can take it to the press and/or go legal on it!

    If however we campaign for the ICC to be used we will fail, because it is just the opinions of a small group of clinicians that has not been scientifically replicated and therefore is not science, we will makes are selves look stupid in the eyes of the scientific community, who will immediately see that the ICC is not science, and hasn’t been done according to the correct scientific principles, also the doctors that have written the ICC are very much on the fringes of medicine, and are regarded by large sections of the medical community as being a bit nuts, and of having a habit of saying things are science with no replicated proof! Which is exactly what they have done in the ICC. We can’t go to the press and complain that the government won’t adopt the ICC, because they will ask their science advisers who will say the ICC is not science why do these people want it used, are they nuts? Again I’m not saying that the writers of the ICC are necessarily wrong in what they say, but that their work is not backed up by scientifically replicated studies so it carries very little weight in the medical and scientific world and can very easily be rejected, and the CDC have already made it clear that they will not be accepting it, and are planning to tinker with their existing definitions instead.

    If we are to campaign for anything we have to lose the Victim mentality immediately, we can’t keep being like weak little children going to the CDC with are begging bowl out saying please sir can we have some more, this is a losers mentality. We need a winner’s mentality; it is not a case of us attacking the beast (the CDC) with a sling shot. We need to wake up and realize that we are the beast; we are 4 million people plus 10-20 million friends and relatives, against the tiny little tin pot CDC CFS department, which most of the rest of the CDC doesn’t have any respect for!

    If the US orgs can get organized and tell the politicians that they represent 20 million people who will vote against any party that doesn’t give them what they want, and if this want is reasonable so that the press can also be made aware of it and people will be outraged that US citizens are not getting basic human rights meet, and we are not asking for anything that is unscientific or outrageous. Then as the election is going to be very close, the politicians will give us what we want, which in reality isn’t very much, and won’t cost much money, Obama can give us complete testing to rule out all other disease in suspected CFS patients, funding for finding out what ME is, based on pure cohorts, and close the CDC CFS department and open one at the NIH with the stroke of a pen!!! He would be stupid not to, and risk losing the election!!! Are problem is that the politician are completely unaware that there is a problem, and that they could easily buy votes by giving us what we want!

    So if the patient community can look at it this way and the US orgs will organize it we can achieve success!

    So to see what we really think, could everyone answer to themselves, these questions based on what they think and want, not on what they believe is possible!

    Are we all in agreement that we don’t want to be diagnosed with the psychiatric diagnosis CFS?

    Are we all in agreement that everybody should be completely tested for every other disease that could possibly be causing their symptoms, and that this should be a basic human right in the most powerful country in the world?

    Are we all in agreement that, ME is a disease that has a certain set of symptoms that is not any of the other known diseases that can cause these symptoms?

    Are we all in agreement that ME should be properly researched and funding should be provided to do this?

    Are we all in agreement that are best option is to have new research done along the lines that I have outlined, that will do the scientific steps 1, 2, 3, and 4 of creating a new disease, so we can then have a pure replicated scientific definition that the psyc lobby can’t argue with! Instead of promoting existing definitions that because they are not based on replicated science the psyc lobby can just ignore and continue on the way they have for the last 25 years?

    Are we all in agreement that the CDC has shown an utter failure to do anything useful for the last 25 years and therefore should not be allowed to do CFS research or have a CFS department?

    Ok bob here is what I think we should be campaigning for in its simplest form, and I’ll explain how after. This is not a list just to recommend to the CFSAC that has a long history of being very unhelpful and completely misunderstanding the situation. This is the plan for all advocacy! The first place it should be sent to is US politicians and the press.

    1. A 100% complete differential diagnosis and testing list written in a medically structured way that is easy for the average doctor to use, must be written, and it must become compulsory for all patients to get this testing done.

    2. All patients that do not have a known disease found by this testing process (i.e. are in the ME group), will be given the full protection given to anyone with a serious physical medical condition. (This is to protect them from the DSM and psyc lobby. It doesn’t matter what this group is called it could be ME it could be disease X, but they must have this protection, until the science is done to find the physical nature of their suffering.)

    3. Appropriate funding, facilities and scientists must be provided for research! This must start with a study that goes along these lines. It selects a pure cohort of say four hundred people, with all other diseases ruled out, divided into four equal groups who are studied at four different facilities. They will be asked what all their symptoms are, and examined, and will be tested for NMH, POTs etc, ability to handle exertion, lung function, have SPECT, PET, MRI scans etc, tested for cortisol production etc, immune status etc, basically everything that researchers have been saying that they are finding. All four groups will have exactly the same tests so it is a replicated study.

    This will provide the scientifically replicated information, from which they will be able to create a scientific definition of what this disease is, (rather than the money being wasted in a random fashion on dumb projects like looking for childhood abuse in CFS patients that the CDC does.) when this is done steps 1-4 of creating a new disease will have been completed, funding must then be provided for step 5, finding cause and treatments.

    4. The CDC CFS department is closed, and a new one to do the research is created at the NIH, and that this new department will not be called a CFS department! (They will have to come up with a more appropriate name.)

    The request for all of this to be done has to be backed up by the published research that shows the enormous cost to the US economy of all these people being sick, the cost in Georgia alone is estimated to be 1.6 billion dollars see http://www.resource-allocation.com/content/9/1/1/

    That’s it four simple, medically, scientifically, morally and economically reasonable requests that will solve the entire problem very quickly and will not cost a large amount of money.

    So to do this we need the US orgs on board telling the politicians that 20 million people won’t vote for them if we don’t get what we want, which would probably cost under 50 million to achieve. If a politician isn’t prepared to buy 20 million votes at the cost of $2.50 a vote, they are not a politician!!!

    If these goals are achieved in the US it will quickly provide the scientific information that will make it impossible for governments in the likes of the UK to maintain their current position and everyone in the world will then get the help they need.

    To achieve the first goal.

    1. A 100% complete differential diagnosis and testing list written in a medically structured way that is easy for the average doctor to use, must be written, and it must become compulsory for all patients to get this testing done!!

    The US orgs must demand that this is done, that a group of expert diagnosticians is set up to write the complete list, they must demand that the two doctors who have the most experience and success at finding the misdiagnosed in the CFS groups are included either directly or as consultants in the process, these two doctors are Drs Hyde and Mirza! The US orgs must demand that it becomes compulsory or they will be instructing the people they represent to vote against the government.

    It would be a good idea before starting this process to start by getting someone like Dr Garcia to look at the information that I outlined that shows how bad the CDC testing is and for them to talk to Drs Hyde and Mirza to get more information. So the approach to the government is done by a doctor who has all the information, rather then it coming from medically unqualified people.

    Because the US health system is largely private and insurance based the US government must pass a law to make it mandatory for all health providers to do this compulsory list of testing, the private sector cannot object to this because they are supposed to have been doing it anyway!! The good thing is that because the US system is largely private, the US government won’t be footing the bill for the extra testing, so will have no financial reasons to object to making it law.

    2. All patients that do not have a known disease found by this testing process (i.e. are in the ME group), will be given the full protection given to anyone with a serious physical medical condition. (This is to protect them from the DSM and psyc lobby. It doesn’t matter what this group is called it could be ME it could be disease X, but they must have this protection, until the science is done to find the physical nature of their suffering.)

    This is achieved by the US orgs demanding it backed by the treat of 20 million people voting against the government. And by the scientific evidence that we have that these people have been shown in numerous studies to have findable physical anomalies and therefore do not have the psychiatric disease CFS which does not have physical anomalies.

    3. Appropriate funding, facilities and scientists must be provided for research! This must start with a study that goes along these lines. It selects a pure cohort of say four hundred people, with all other diseases ruled out, divided into four equal groups who are studied at four different facilities. They will be asked what all their symptoms are, and examined, and will be tested for NMH, POTs etc, ability to handle exertion, lung function, have SPECT, PET, MRI scans etc, tested for cortisol production etc, immune status etc, basically everything that researchers have been saying that they are finding.

    This will provide the scientifically replicated information, from which they will be able to create a scientific definition of what this disease is, (rather than the money being wasted in a random fashion on dumb projects like looking for childhood abuse in CFS patients that the CDC does.) when this is done steps 1-4 of creating a new disease will have been completed, funding must then be provided for step 5, finding cause and treatments.

    This is achieved by the US orgs demanding it backed by the treat of 20 million people voting against the government. And by the scientific evidence that we have that these people have been shown in numerous studies to have findable physical anomalies and therefore it needs to be investigated properly with replicated studies, because they can’t have CFS because they have finable physical anomalies.

    4. The CDC CFS department is closed, and a new one to do the research is created at the NIH, and that this new department will not be called a CFS department! (They will have to come up with a more appropriate name.)

    This is achieved by the US orgs demanding it backed by the treat of 20 million people voting against the government. It would be wise if before this was done, some research was done by the US orgs to list the long history of CDC failures, and the deliberate ignoring of medical evidence. If someone like Tina is interested I can point them in the direction of quite a bit of this evidence.

    Such as a senior writer of the first CDC CFS definition, admitting in a published article, that he, therefore the CDC new that patients at Tahoe had failed MRI scans before they invented CFS, and he refers to the Tahoe as an outbreak and describes it as similar to other outbreaks in the US going back to 1934 and uses the US name for ME, Epidemic Neuromyasthenia for all these outbreaks including Tahoe. So much for the CDC saying no physical anomalies and not contagious.

    I can provide the article that shows that a senior ex CDC doctor called Dr Henderson told the CDC that Tahoe was Epidemic Neuromyasthenia (ME) and told them where to find all the literature on it.

    I can provide articles written by the CDC that prove that the CDC read extensively the old literature on ME, which showed a rapidly spreading serious neurological illness that did have measurable physical anomalies, and instead invented a disease that they said was not contagious, and didn’t have physical anomalies.

    There is the well documented fact that the CDC CFS department misappropriated millions of dollars for research.

    The fact that in the last decade they have wasted millions of dollars on advertising their new disease CFS instead of researching it.

    We have the fact that the CDCs list of diseases to rule out, and testing to do this is beyond woeful

    That their much Heralded Wichita study was done without properly ruling out other disease guaranteeing mixed cohorts.

    And all their so called research is based on mixed cohorts, because they don’t rule out all other diseases.

    That the Fukuda definition was written mainly by psychiatrists.

    That they promote psychiatric treatments for CFS patients such as CBT, and GET.

    The not to insignificant matter of the CDC not being allowed to invent new diseases, and yet we have CFS??!!!

    That research has shown that the Reeves definition wrongly diagnoses about 30% of people with depression with CFS.

    And that the CDCs plan for the future is to compare the faulty Wichita study with the Faulty Fukuda definition etc, etc, etc.

    With a little bit of effort it’s not going to be very hard to come up with enough evidence to back a request for a change to the NIH, based on the CDC proven history of achieving nothing of any use to anyone and wasting and misappropriating millions of dollars of government money!

    It is far better for the research to be done by the NIH anyway because they have a far bigger budget and the facilities to do it. They are after allthe primary agency of the United States government responsible for biomedical and health-related research see http://en.wikipedia.org/wiki/National_Institutes_of_Health

    So that would be my plan, but for it to work we need leadership from the US orgs and a dramatic change in attitude amongst large amounts of the patient community, because they are about as defeatist as you can get. I will not support any slow incremental changes plan, or any plan that does not tackle the core issues, because it will lead to the death of thousands of people and I’m not having a bar of it.

    RE the Norwegian researchers

    “Well, they have to start with a definition, don't they, or they would not know who was an ME or CFS patient.
    The Norwegian researchers do not rely on any definition as the final word as to who has ME, and nor should any researchers, the Norwegian researchers know that none of the definitions will guarantee pure cohorts, so they are fastidious about testing for all other possible diseases, because if they mistakenly include a patient with a different disease, there is a very high chance that they will kill the patient if they give them Rituximab.

    The patient community needs to understand that having the symptoms found in any of the definitions does not mean you have ME, because so many other diseases cause these same symptoms.

    Until such time as a diagnostic test is found for ME, the only way that anyone can know if they have it or not is to have all the other diseases that can cause these symptoms ruled out, which leaves ME as the only possibility.

    This is why I’m stating that we need to get everyone tested for all other diseases that can cause these symptoms, so we actually know who has ME, and then they can be researched.

    All the best Bob, I do appreciate your efforts!!!!!!!!!!!!!!!
  18. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    Jumping back in. While it does seem the government ex-officios said no to anything the CDC did not come up with, I notice that for fibromyalgia, they are using the American College of Rheumatologists diagnostic criteria on their website: http://www.cdc.gov/arthritis/basics/fibromyalgia.htm So in that case, they adopted for the website the criteria developed by an outside association.

    Again, we have a double standard, something mentioned in PANDORA's testimony.

    So, really, does the ICC scientists carry the same credibility? Likely not. Would the IACFS/ME if they endorsed CCC, ME-ICC or any of them? I don't know. Something in my gut tells me the CDC would not accept something from the IACFS/ME as readily as they would from ACR.

    The FDA lady made suggestions on how to get our illness out of the "fringe."

    While the CFSAC cannot put on an education project, seemingly, from what Dr. Nancy Lee was saying, they could recommend one to educate the leaders of professional orgs, such as the AMA and others. (This was an idea discussed during the definition topic.) What agency in the DHHS would do that? I don't know. I'm sure Jennie would know. But, that would be a good thing, I would think, as long as the CDC toolkit is not used.

    Tina
  19. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    1. Promotion of CBT and GET as therapies for CFS patients should be removed from CDC literature, toolkit and website.

    We can't expand this much to remove most of the poor studies on CFS (and not ME) on the CDC site. The site is to promote CDC research. Its more about getting them to editorialize it to put the old research in modern perspective I suspect. CBT/GET is a reality though. I think rewriting it to show what the research actually demonstrates rather than the overblown claims would be better than scrapping it. Like a minority of vaguely defined patients improve a little, and the downside has been largely ignored. Most patients have no functional improvement, and some studies show there is a decline in functional capacity. It would be better if they could come out against CBT/GET but that might be too much to hope for.

    Bye, Alex
  20. Bob

    Bob

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    England, UK
    Well, as Koh is expected to respond to all recommendations now, maybe that's one good reason to resubmit old recommendations. Resubmitting recommendations would also inform the government agencies of the CFSAC's current and ongoing priorities. (Maybe the CFSAC should continuously resubmit all their past proposals, that haven't been acted on, and if still relevant, each time they have a meeting?)

    If you were thinking of some extra wording, then please feel free to suggest it, and I'll add it to the list for everyone to consider. You can either add a separate item, or add wording to item 17 - it's entirely up to you.

    If anyone else wants to have a go at improving or adding wording then please feel free.
    This is a very flexible and informal process at the moment.

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