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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. Bob

    Bob

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    OK Willow, please supply some text, when you've had time to think it through.
  2. WillowJ

    WillowJ Senior Member

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    sorry, edit in post 377, tho the MFI and CIS require more thought

    please tag me in post 379 so it shows up in my list of notices and I can find that post again
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  3. Bob

    Bob

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    Thanks Willow. If you do another edit, then please place it in a fresh post, so I don't miss it.
  4. Bob

    Bob

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    This is now an OLD list, please go to this link for the new list:
    http://forums.phoenixrising.me/inde...r-what-should-we-do.17972/page-21#post-277173

    -------------------------------------------------------------------------------------------------------------------------

    Newly added text, for consideration, is in blue.
    Our comments and questions from the discussions are in red/brown.


    1a. An independent panel of Diagnostic experts will be created to create a complete differential diagnosis list of all other diseases and conditions that can cause the symptoms of ME and CFS. They will write a step by step easy to follow guide on how to rule out all the other diseases and all the tests that are needed to do this.
    Clinicians and researchers who have already created differential diagnoses lists*, or have a track record in finding the misdiagnosed patients in the CFS group, will be consulted or included in the panel. This guide will be placed prominently on the CDC web site replacing its existing testing requirements.
    *Clinicians and researchers should include those such as, Dr Byron Hyde, Dr Shirwan A Mirza, the writers of the ICC and the writers of the IACFS/ME toolkit etc.
    (I propose we create a comprehensive list of clinicians/researchers we think would have good insight into differential diagnoses.)


    Alternate wording: "...a comprehensive differential diagnosis list of other diseases and conditions, aiming towards the ideal situation of a complete differential diagnosis list of all other diseases..."




    1b. It will then become compulsory for all patients who have suspected CFS or ME or have already been diagnosed with CFS or ME, to be offered the testing recommended in the guide that is created by this independent panel.




    2a. A new definition will be created, that will be based on independently replicated science, the new definition will be based on the patients having had all the testing to rule out all other diseases, using the differential diagnosis list and testing requirements that will have been created when article 1a has been accomplished.

    A review of the medical literature must be done, to compile a list of all physical anomalies that have been found in CFS and ME patients, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH, (serum LPS, cytokine panel, dim cell/bright cell ratio (types of NK cells), elastase) etc. Tests for all anomalies will be performed in a replicated manner on all the patients in all the groups.

    When creating the new criteria, it must not be assumed that the ME/CFS population representsa homogeneous population, and so research into sub-typing and cluster analysis of symptoms and biomarkers should be considered, and sub-groups should be created within the criteria, if appropriate.
    From this information a new definition will be written, or two definitions, if it found to be two different illnesses.


    Alternatives 2a:

    2aii. A new definition will be created. that will involve a panel of physicians expert in the field of CFS/ME, and who have an understanding of the physiological abnormalities in CFS/ME patients.
    The new definition will be based on independently replicated published scientific papers in relation to the physical symptoms, and physiological abnormalities in CFS/ME patients.
    The new definition will exclude patients who test positive for all other diseases, as per item no. 1., using the differential diagnosis list and testing requirements that will have been created when article 1a has been accomplished.

    A review of the medical literature must be done, to compile a list of all physical anomalies that have been found in CFS and ME patients, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH, (serum LPS, cytokine panel, dim cell/bright cell ratio (types of NK cells), elastase) etc. Tests for the most significant of these anomalies (as decided by the panel of experts) will be performed in a replicated manner on a representative selection of selected cohorts of patients in order to create the diagnostic definition.

    When creating the new criteria, it must not be assumed that the ME/CFS population representsa homogeneous population, and so research into sub-typing and cluster analysis of symptoms and biomarkers should be considered, and sub-groups should be created within the criteria, if appropriate.
    From this information a new definition will be written, and further definitions, if it found to be more than one different illnesses.



    Alternatives 2b:

    2bi. And a new name/names for the illness/illnesses will then be created based on the scientific findings.

    2bii. When a new clinical diagnostic criteria is reached, the CDC should change the name of the disease to reflect the biological abnormalities and known pathologies. This may end up being ME or another name, but it should not be "CFS" as that name does not reflect the research that reveals the biological underpinnings of the disease. Until then, the CDC website should state that ME is a subset of CFS patients with the additional criteria of _______________, __________________, and _____________________.

    2biii. And a new name/names for the illness/illnesses will then be created if required, based on the scientific findings. CFS will not be used for any of these illnesses due to the strong dislike for this name amongst the patient community because it trivializes the patients suffering, and because it has in the past been portrayed as a Psychiatric illness.







    2c. Adequate Funding will then be provided to further research patients that fit the definition/definitions created by this process to find diagnostic tests, causes and treatments.

    2d. The CFSAC and the Patient Community will be regularly updated on the progress of this project and the details of it.




    3a. All CFS and ME patients in the USA will be officially recognized as having a serious Physical illness until such time as the science in sections 2a and 2b has been done and the answer to what this illness/illnesses is has been found.

    3bi. CDC will advise/notify doctors and insurance companies, that CFS must be treated as a biomedical illness, and not as a psychiatric illness.

    3c. The CDC will write on its website that CFS and ME are serious physical illness, until such time as the science in articles 2a and 2b has been done.




    4. 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.

    Alternatives 4:

    4i. That, consistent with its statement that “ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS,” the CDC will recognize the ME-ICC and its predecessor, the Canadian Consensus Criteria, as case definitions for ME, distinguishing ME (ICC, CCC) from CFS (Reeves, Fukuda).
    Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population.

    4iii. That, consistent with its statement that “ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS,” the CDC should recognize the ME-ICC, as the case definition for ME, until such time as (articles 2a and 2b have been completed and) a new definition has been written based on replicated science. Until then ME-ICC will be used to distinguish ME from CFS (Reeves, Fukuda).

    Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population.

    4ii. Given that Fukuda states that subtyping is required and that Fukuda fails to acknowledge the hallmark PEM/PENE, patients that meet the ME-ICC or CCC should be removed from the Fukuda defined patient population and referred to as ME.



    5. More research funding for the biomedical model of illness, using CCC and ICC alongside Fukuda for all research, until such time as the new definition based on replicated science is completed.

    Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population.

    Alternatives 5:

    5i. More research funding for the biomedical model of illness, using CCC and ICC for all research, until such time as a new definition based on replicated science is created.
    Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population.


    6. Research trials be carried out into Rituximab, and related pharmaceuticals, with these researchers communicating with Drs Fluge and Mella to help coordinate the research and provide details of how they select patients for trials.



    7. Promotion of CBT and GET as therapies for CFS patients will be removed from CDC literature, toolkit and website.
    (can we be specific about what we want removed?)

    Alternatives 7:

    7ii. The CDC to remove all reference to CBT and GET from it's website, and clinicians warned that these therapies do not help the majority of CFS/ME patients, and a high proportion of patients anecdotally report being harmed.
    The PACE Trial* demonstrated that CBT is ineffective at reducing phsycial disability in secondary care patients.
    The PACE Trial demonstrated that only approximately 13% of secondary care patients respond to CBT or GET, but the trial excluded severely affected patients.
    The FINE Trial* demonstrated that severely affected patients do not respond to therapies based on CBT that include components of GET.
    In UK patient organisation surveys*, a high proportion of respondent reported being harmed by both CBT and GET, when administered in ordinary clinical settings, outside of the highly controlled setting of a government-funded clinical trial.
    (*I will provide references for all of these assertions, if we take this forwards.)

    7. CBT can be an optional therapy for CFS patients, to help with the emotional issues of having a physical illness, and GET should be removed from CDC literature, toolkit and website.

    7i. CBT to assist coping can be an optional therapy for CFS patients but not for the purpose of modifying hypothesized dysfunctional illness beliefs, and GET should be removed from CDC literature, toolkit and website.




    8. The CDC will 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.
    (should we be more specific about this and provide specific information about what we want removing, or at least examples?)

    Alternatives 8:

    8i. "The CDC will remove all information from the CDC's CFS website, CDC's CFS literature, & CFS toolkit, that is based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS."

    8ii. The CDC will conduct a systematic review of all its past research, and removed from the CDC's CFS website, CDC's CFS literature, & CFS toolkit, any information and research that is based on on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS. Any unretracted or unremoved research, which is based on the previously described criteria, must be clearly marked as outdated.

    8iii. The CDC will remove all information from the CDC's CFS website, CDC's CFS literature, & CFS toolkit, that is based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS.



    9. 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), and the requests we outline, the CFSAC should re-issue.

    Alternatives 9:

    9i. 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 ME/CFS policy in a clear and concise manner.

    9ii. 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), and the requests we outline, the CFSAC should re-issue recommendations that address current priorities in ME/CFS policy in a clear and concise manner.



    10. The CDC will produce a state-of-knowledge article, updated annually, in relation to ME/CFS, so that the older research and current views can be put in perspective. This will be an annual review article to be published.



    New:

    11. The CFSAC should aim to educate physicians, schools, social services, and the public through any means possible to it, including making recommendations.
    (The reference to eduction has been placed back on the list, but with different wording - whoever first opposed the original item re eduction, please can you repost you objection if still appropriate.)


    12. CDC should cease use of the surveys developed and presented in its "clinically empirical approach to the definition and study" of the disease, Reeves et al. 2005.
    (Again, this has been reposted but with different wording. If the original objections still apply, then please repost them.)


    Alternative 12:

    12i. CDC should cease diagnostic use of the surveys in its "clinically empirical approach to the definition and study" of the disease, Reeves et al. 2005, and abandon the scoring system described in that paper (and in the Wagner et al. 2005Psychometric Properties study). CDC should replace the Chalder Fatigue Scale with a scale able to assess severe long-term disease(c.f. a paper by Jason, need reference).
  5. WillowJ

    WillowJ Senior Member

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    no problem. I did that one that way so Dolphin would only need to read the one, but I'll do this way normally.
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  6. Bob

    Bob

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    rlc WillowJ, neither of you responded to my suggestion of incorporating both of your points of view, along the lines of:

    ...a comprehensive differential diagnosis list of other diseases and conditions, aiming towards the ideal situation of 100% complete differential diagnosis list of all other diseases...

    Your thoughts about having something similar to that?

    (it should be phrased better, of course)
  7. jspotila

    jspotila Senior Member

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    No, the CFSAC does not produce any reports about the current state of the knowledge. The closest they came was the science day in October 2010.

    My interpretation of the charter is that the CFSAC makes recommendations to the Secretary on the four topics listed. "Partnering to improve the quality of life" was added at the last charter revision in 2010. It's rather vague, but again, the beginning of that section (advise and make recommendations to the Secretary) modifies the four topics.

    Interestingly, (and this is a sidetrack so feel free to ignore me) I was doing additional research today and came across the discussion in 2010 about the charter revisions. The May 2010 minutes show that the committee actually discussed adding a clause to the charter that would empower them to create a strategic plan, and they ultimately decided not to add it. They also discussed adding language to the bylaws about how the chairman would try to meet with the assistant secretary after each CFSAC meeting to discuss the recommendations. Even though the committee said it wanted to add that language, it did not make it into the bylaws revised in March 2011.
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  8. jspotila

    jspotila Senior Member

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    I thought of something simple and concrete that every can do right now about the CFSAC. At the June meeting, Dr. Lee said there would be opportunity for public comment on the draft revised charter. She did not provide any specifics about how that comment opportunity would be provided. I sent her the email below this evening asking for more information. If you are so inclined, you could send a similar email. Maybe if multiple people ask, we will get info on the process. There isn't much time before the charter expired on September 5th.

    To: OS OPHS CFSAC ( HHS/ OPHS) <cfsac@hhs.gov>
    Sent: Thursday, June 28, 2012 8:01 PM
    Subject: Charter revision

    Dr. Lee,
    At the CFSAC meeting on June 14th, you indicated that there would be an opportunity for public comment on the charter revisions for the committee. That opportunity would be most welcome!
    Given the charter expiration deadline of September 5, 2012, I wondered if there was any update on the process for public comment? In order for the public to give the best feedback on the revised charter, it will be helpful to ensure there is adequate time before the end of August. Given the cognitive difficulties affecting many patients, we will need several weeks to provide high quality responses. There are many organizations and individuals who can help publicize the comment process as well, hopefully ensuring a broad based response.
    I would appreciate any update you can provide on the comment process. Thanks in advance.
    Cheers,
    Jennie Spotila
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  9. Dolphin

    Dolphin Senior Member

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    I see I'm tagged in this but haven't followed this thread.

    In case it hasn't been pointed out, the October 2009 CFSAC meeting recommendations included:
    However, if one wanted to follow up on that, here is some more specific info:

    The CDC doesn't generally use the Chalder Fatigue Scale. The questionnaire they use in the empiric criteria definition is the MFI-20:
    "Reduced activity" isn't a measure of fatigue and so could easily be complained about i.e. if you want to be specific, say you don't want them to use that subscale. It's hard for them to argue with that than simply saying not to use the whole questionnaire.

    Similarly, it would be harder for them to argue against not using the role emotional subscale of the SF-36, than if one requested the whole SF-36 not be used:
    The paper is at: http://www.biomedcentral.com/1741-7015/3/19
  10. WillowJ

    WillowJ Senior Member

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    Thanks, Dolphin. I knew you weren't following the thread but were interested in 'Empirical' definition and could probably revise my proposal to something that made more sense. :)

    ETA: or provide input for me to revise it to something that makes more sense--thanks :)
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  11. rlc

    rlc Senior Member

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    Hi Willowj, I proposing a comprimise in my next post to bob, see what you think

    All the best
  12. Bob

    Bob

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  13. rlc

    rlc Senior Member

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    Do Hi Bob, RE 1a. I think it would be wise that we specify some doctors and groups that are to be included or consulted with, for the independent panel; the CDC could just otherwise select a panel who will back up their existing rubbish differential diagnosis list.

    This is why it is very important that it is an independent panel, the CDC can be included if they want, but we don’t want them hijacking the panel, and giving us another rubbish list.

    You asked about a reference for Dr Byron Hyde, I think we could point out that he has written an entire book on the subject. Missed diagnoses Myalgic Encephalomyelitis and Chronic fatigue syndrome by Dr Byron Hyde found here http://www.nightingale.ca/index.php?target=bookofferand is available on Amazonhttp://www.amazon.com/Diagnoses-Myalgic-Encephalomyelitis-Chronic-Syndrome/dp/140927571X
    He has also written articles such as the Complexities of Diagnosis which explain some of his testing methods seehttp://www.wicfs-me.org/Pdf%20Files/Byron%20Hyde%20-%20Complexities%20of%20Diagnosis.pdf

    This guy really knows his stuff when it comes to ruling out other diseases and it would be good if his knowledge was included.

    I propose a compromise for the wording of 1a, re dispute over 100% complete, how about we just say (a complete differential diagnosis list of all other diseases and conditions) If when are suggestions are presented to the CFSAC, the likes of Tina and Medfeb take with them the IACFS/ME list, Dr Mirza articles, Dr Hyde articles, the CCC list, the CDC list and the NICE list, (I can help compile this if they want) and say look the reason for us asking for this, is that all these differential diagnosis lists are very different and the CDCs is the smallest of the lot, so we want an Independent panel of experts convened to make a complete differential and guide to testing that is easy to follow by the average doctor, it will then be very clear what the problem is and what we mean by complete. I don’t think that there is any need for us to discuss anymore in this tread what should or should not be in the completed guide, we just leave it to the independent panel to resolve the problem, they are the experts in this! If the list that is created is not up to standard we can ask for it to be reviewed latter

    So I think that 1a should read

    An independent panel of Diagnostic experts will be created to write a complete differential diagnosis list of all other diseases and conditions that can cause the symptoms of ME and CFS, they will write a step by step easy to follow guide on how to rule out all the other diseases and all the tests that are needed to do this. Clinicians and researchers who have already created differential diagnoses lists, or have a track record in finding the misdiagnosed patients in the CFS group, will be consulted or included in the panel. Such as, Dr Byron Hyde, Dr Shirwan A Mirza, the writers of the ICC and the writers of the IACFS/ME etc. This guide will be placed prominently on the CDC web site replacing its existing testing requirements.

    For 1b I go for the first option (compulsory) it leaves no doubt that all patients should be offered the option of these tests. Advisory doesn’t really mean that all patients are offered the tests and leaves it too much open for individual doctors to decide that they can’t be bothered to do the work involved, so I just won’t let the patient know that they have this option. If it is compulsory a doctor could then be in trouble if they fail to offer the patient the tests, so they are more likely to do it.

    So I think it should be

    1b. It will then become compulsory for all patients who have suspected CFS or ME or have already been diagnosed with CFS or ME, to be offered the testing recommended in the guide that is created by this independent panel.

    For 2a. I think it would be a big mistake to go for the second alternative, firstly a lot of the CFS/ME clinicians have a long history of being at war with the CDC and the CDC don’t like them and will not accept them being used! There is also not very many of them, so it will be very difficult to get enough to do replication studies at the same time. Some of them are not medically very highly qualified, so their opinions will not be accepted by the scientific community, Many CFS/ME clinicians have on many occasions said that things are facts when they have not been scientifically replicated, which has lead to the scientific community to lose respect for them and they will not be accepted by the scientific community. A lot of them have no qualifications in the kinds of testing that will be needed. The CFS/ME clinicians have never managed to come to an agreement as to what ME and CFS are, e.g. Dr Peterson says it’s all CFS, ICC writers say it is two different conditions. So they will be arguing before they start and will be very unlikely to come to an agreement as to what to do. Plus a lot of them are very committed to doing their own work based on their own views and will not have time to be involved in this.

    We also have the very significant scientific problem of bias, These clinicians have very strong opinions as to what they think that CFS and or ME are and what tests should be done. They have pre formed opinions and are biased, which will affect the outcomes.

    The line “who have an understanding of the physiological abnormalities in CFS/ME patients.”

    Defeats the entire purpose of what a replication study is about, The whole point is that nobody has any replicated scientific proof of what ME or CFS are, or what the Physiological anomalies are, ME and CFS may turn out to be ten different conditions nobodies knows if CFS and ME exist as they are believed to be by some people.

    So this has to be approached with an open mind and no fixed beliefs at all.

    So using XMRV as an example, lots of studies were done, some said they found it some said they didn’t, nobody could agree and the different scientists were at war with each other criticizing each other’s work, and nothing was going anywhere, which is the same situation we have with CFS and ME research.

    So the solution was a Replicated study, Dr Lipkin organized the BWG replicated study where the same experiments were done by different groups in different locations, and the results put an end to the debate in the scientific community and they moved on to researching different things.

    What I’m proposing is very similar to the BWG study, to find out what CFS and ME are, and what the symptoms and physical anomalies are, and if it is one, two or multiple illnesses, because it is replicated we will have the scientific proof for the first time that answers these questions.

    Now in no way I’m I saying that no CFS/ME clinicians are involved in this, I’m saying that we leave it to the experts to decide. When a review of the scientific literature on CFS and ME is done, we are very likely to see the experts notice things like there is a lot of stuff on NK cells in the literature, and this Dr Klimas is at the forefront of the research and seems to really know her stuff so let’s get her involved etc, etc.

    So I’m saying we leave it to the experts to decide who is involved in the replication study, We can’t go round telling the scientists who we think should be doing the study because we will be laughed at and lose respect because we are not qualified to say who should or should not be doing the study. This study has to be done with an open mind by people who are experts at doing the testing that is required, We have no chance whatsoever of getting this version of 2a excepted, because the CDC will not want the CFS/me clinicians involved and will reject it out of hand and it will antagonize the CDC.

    So I think that the first version of 2a is correct but I think the wording of the last sentence should be changed slightly

    from

    From this information a new definition will be written, or two definitions, if it found to be two different illnesses.

    To

    From this information a new definition will be written, or several definitions, if it found to be more than one different illness.

    So it should be

    2a A new definition will be created, that will be based on independently replicated science, the new definition will be based on the patients having had all the testing to rule out all other diseases, using the differential diagnosis list and testing requirements that will have been created when article 1a has been accomplished.

    A review of the medical literature must be done, to compile a list of all physical anomalies that have been found in CFS and ME patients, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH etc, etc. Tests for all anomalies will be performed in a replicated manner on all the patients in all the groups. From this information a new definition will be written, or several definitions, if it found to be more than one different illness.




    Some people have raised concerns about test for (all) anomalies will be performed, But this will be up to the scientists to decide they will review the medical literature and decide what will be tested, and will reject anything in the literature that is just plain silly. So again we are leaving it to the experts.

    For 2b I suggest that it is worded like this which solves all problems

    2b. And a new name/names for the illness/illnesses will then be created if required, based on the scientific findings. CFS will not be used for any of these illnesses due to the strong dislike for this name amongst the patient community because it trivializes the patients suffering, and because it has in the past been portrayed as a Psychiatric illness.

    So this means CFS will not be used, if it turns out to be just one disease it can be called ME if this term accurately describes the scientific findings, if it turns out that it is multiple illnesses then they will have to come up with new names and none of them will be CFS.

    2c and D are perfect.

    I’m totally happy with 3a, bi and C I think we are done with that section.

    Now I’m going to make a few suggestions.

    This list for it to stand a chance of being accepted needs to be short, simple to understand, and avoid any major battles with the CDC and CFSAC, and avoid anything that will divide the patient community and leave any group feeling left out, and avoid anything that takes resources away from the main points we are trying to achieve.

    So with the intention of simplifying it I suggest that 7, 8 and 10 are rolled into one to become the new four.

    So I suggest without going into exact wording that it goes something like CBT and GET are removed from CDC website, (we read through the entire CDC CFS site and indentify all other psyc babble we wish to be removed) and sections such and such are to be removed as well. And then add 10 at the end, this will shorten the list and make it one request so it will be something like 4a, b and C

    6. should certainly be scrapped, if the Norwegians make more progress the drug companies will jump on board and provide money and do more research and they will be contacting the Norwegians anyway.

    5. I believe should go completely, because it will cause competition for money that will be need to achieve 2, a, b, and c. And the CDC will not accept ICC or CCC, so it’s a no win battle that will antagonize the CDC and make it more likely that they will reject everything we suggest out of hand which would be a tragedy!!!!! Wanting the use of the ICC and CCC also upsets parts of the community who don’t qualify as having ME or ME/CFS according to these definitions, so we are dividing the community by asking for this, and it leaves a large group of people out in the cold. Asking for one replication study on all patients who have had known diseases ruled out avoids this problem and includes everyone. Also by telling scientists what to do and that they must use a certain definition we will upset them, and it makes us come across as if we are no it all’s who think we know better than scientists even though we don’t have scientific qualifications.

    Now this is going to be controversial and seem odd coming from me, but please everyone bare with me and have a good think about this.

    I know firmly believe that article 4 should be dropped completely.

    Firstly to Ember I know you are very passionate about this but believe me if we weren’t going for the replication study I would be backing you to the hilt.

    The reasons I think that 4 should be dropped completely are

    1. This part of it

    Means it has no chance of success, because we are asking the CDC to publicly admit that they have known that ME is a different disease all along and have done nothing whatsoever to help people with ME, the CDC does have a legal department who will see that by the CDC admitting this, it is admitting guilt, and the CDC will be wide open to class action law suits, which they will lose because they have admitted guilt. So they won’t accept it because of this, and we will have seriously antagonized the CDC who will very likely reject all are suggestions and want nothing more to do with us ever again.

    2. The CDC has refused to acknowledge the CCC for years and are not going to accept the ICC which is a updated version written by the same principle writers. They will reject this and will be antagonized by this request and are likely to reject are entire proposal.

    3. It will open up all the old wounds in the patient community about if ME and CFS are different, and leaves people who don’t fit these definitions out in the cold.

    So the CDC will never accept it anyway, it will seriously antagonize them, and they will more than likely reject are entire proposal, plus it divides the patient community and leaves a large section of it out in the cold.

    So I suggest we drop it completely. It will mean that if are proposal is accepted without it, people will still be stuck with a CFS diagnosis, until the replication study is done, then CFS will be gone for good because we are requesting that it won’t be used as a name for any of the disease/diseases that are identified in the replication study. So we will only be stuck with it for at the most two more years, but during that time CFS will be recognized as a serious physical illness, and all the psyc babble removed from the CDC website, plus the differential guide will come into action very quickly because it won’t take very long to complete, so the misdiagnosed people will get their correct diagnosis soon anyway.

    I also suggest that we drop all of 9 as well, the reason being that are new proposal supersedes everything that has been done in the past, if we ask the CFSAC to review all the past recommendations, what we are effectively saying is, that you have been doing a shit job and have a lot of work to do to catch up, which is going to antagonize them! I suggest that we just let the past stay in the past, and let the CFSAC focus completely on are new proposal, if there are any important past issues that do need a review then the US orgs can ask them to do this separately from are proposal so there is no confusion between the two.

    So I propose that we cut the list to just 1, 2, 3, and the new 4 (7,8 and 10 rolled together)

    The list is then very simple, all of it makes good scientific, medical, moral and economic sense, There is nothing in it to seriously antagonize the CDC or CFSAC, there is nothing in it to divide the patient community, it avoids all the old issues of what to call it, what definition to use, and what the symptoms are, and simply asks for the scientists to follow correct scientific procedure for the first time in this field, and provide us with the answers. We will not be asking the scientists to be doing anything more then to follow correct scientific protocol which should have been done years ago, and we won’t be antagonizing the scientists by saying they should use a certain definition, or going into detail about how we think they should do their job. Everybody gets protection from the psyc babble and the oncoming changes to the DSM-5, everybody gets researched not just one selected group that meets a certain definition and all the misdiagnosed get found and treated. I think in this format the proposal has a far better chance of being accepted and everybody gets helped, and the problem will be resolved once and for all.

    I know doing it like this will involve some people having to compromise on very strongly held views, but it gives us the best chance of having it accepted, if it is, then all the problems will have been solved in about two years, treatments will still have to be found, but Rituximab is looking very promising and maybe available by then.

    I’d also like to propose that unless we have all missed something that is of life and death importance that no new proposals are added to this list. I’m very aware that this tread is taking a physical toll on some of the people participating, including me, and I think we have a general consensus as to what the main issues are and we should wrap this up as soon as possible. So we don’t make people sicker.

    I’d also like to propose that if there are some points that people aren’t able to agree on like say I think 5 should be dropped and someone else doesn’t, that instead of debating it for weeks. We put it to a vote and a pole is set up, but we do ask that only people that have read the information in the tread vote so that we don’t have random people voting who don’t understand the ins and outs of the debated points. People who are for or against the troublesome point should be allowed one more post to state their views clearly. Then the poll is opened for say five days, and after that the results of the democratic process is accepted.

    This means we will soon have this resolved and everyone can take a rest.

    I will now write out how I see that the proposal should be so it is clear for everyone to read and people can debate it and see if we can gain agreement without a vote.


    1a An independent panel of Diagnostic experts will be created to write a complete differential diagnosis list of all other diseases and conditions that can cause the symptoms of ME and CFS, they will write a step by step easy to follow guide on how to rule out all the other diseases and all the tests that are needed to do this. Clinicians and researchers who have already created differential diagnoses lists, or have a track record in finding the misdiagnosed patients in the CFS group, will be consulted or included in the panel. Such as, Dr Byron Hyde, Dr Shirwan A Mirza, the writers of the ICC and the writers of the IACFS/ME etc. This guide will be placed prominently on the CDC web site replacing its existing testing requirements.

    1b. It will then become compulsory for all patients who have suspected CFS or ME or have already been diagnosed with CFS or ME, to be offered the testing recommended in the guide that is created by this independent panel.

    2a A new definition will be created, that will be based on independently replicated science, the new definition will be based on the patients having had all the testing to rule out all other diseases, using the differential diagnosis list and testing requirements that will have been created when article 1a has been accomplished.

    A review of the medical literature must be done, to compile a list of all physical anomalies that have been found in CFS and ME patients, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH etc, etc. Tests for all anomalies will be performed in a replicated manner on all the patients in all the groups. From this information a new definition will be written, or several definitions, if it found to be more than one different illness.

    2b. And a new name/names for the illness/illnesses will then be created if required, based on the scientific findings. CFS will not be used for any of these illnesses due to the strong dislike for this name amongst the patient community because it trivializes the patients suffering, and because it has in the past been portrayed as a Psychiatric illness.

    2c. Adequate Funding will then be provided to further research patients that fit the definition/definitions created by this process to find diagnostic tests, causes and treatments.

    2d. The CFSAC and the Patient Community will be regularly updated on the progress of this project and the details of it.

    3a. All CFS and ME patients in the USA will be officially recognized as having a serious Physical illness until such time as the science in sections 2a and 2b has been done and the answer to what this illness/illnesses is has been found.

    3b. CDC will advise/notify doctors and insurance companies, that CFS must be treated as a biomedical illness, and not as a psychiatric illness.

    3c. The CDC will write on its website that CFS and ME are serious physical illness, until such time as the science in articles 2a and 2b has been done.

    4. I suggest that 7, 8 and 10 are rolled into one to become the new four.
    So I suggest without going into exact wording that it goes something like CBT and GET are removed from CDC website, (we read through all of the CDC CFS site and indentify all other psyc babble we wish to be removed) and sections such and such are to be removed as well. And then add 10 at the end, this will shorten the list and make it one request so it will be something like 4a, b and C
    All the best












  14. rlc

    rlc Senior Member

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    Hi bob I'll have a look at those post in a bit and see if there is anything that I haven't covered in my last post, I'm in the southern hemisphere so I'm asleep while most of you are writing and it can take a bit to catch up

    All the best
    Bob likes this.
  15. Bob

    Bob

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    OK, thanks rlc, I wasn't hassling you.. I just thought you didn't see those posts.
  16. ukxmrv

    ukxmrv Senior Member

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    Bob and all,

    Just a comment about this suggestion

    (quote from Bob's great post)

    7ii. ............
    In UK patient organisation surveys*, a high proportion of respondent reported being harmed by both CBT and GET, when administered in ordinary clinical settings, outside of the highly controlled setting of a government-funded clinical trial.
    (*I will provide references for all of these assertions, if we take this forwards.)

    (end of quote)

    The claim that patients are "only harmed" out of a clinical setting is a spin that AFME put on their own survey results. If you look at the actual survey results there is no distinction between clinical settings and trials. Patients were merely asked what kind of therapist carried out the GET (not if they were done by the "right" practitioner in a particular setting). This spin was designed by AFME to get backing for their PACE trial champions but there was no proof to back up the ascertain that if GET was carried out in a clinical trial it was safer and the survey data didn't back this up.

    I can guess that we don't know the setting the surveys were in but if we word it as above AFME, White et al will use this to argue that GET is safe if used in the right setting (which they argue already)

    http://www.bmj.com/content/335/7617/411?page=1&tab=responses

    (quote from one rapid response)

    We don't know why some people reported a positive effect and many
    negative. We also do not know what illness they suffered from and what
    regime they underwent.
    The first survey showed us that very few people benefited by GET to a
    “strongly positive” level.
    From the second survey we know that the majority had a "negative" or
    “neutral” effect and that these were treated by Professionals. The very
    people we rely on to give us “appropriate advice and therapeutic support”.
  17. Bob

    Bob

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    OK rlc, I'm ok with naming names, as long as we include a comprehensive list of clinicians and researchers who we think could contribute. Are you ok with that? I've changed your version slightly so have a look at the main list. Let me know if you object.

    Yes, it might be helpful to include a list of differential diagnoses lists, so people know what we are referring to.
    We can add a list onto 1a.



    I'm ok with that. But let's see what WillowJ thinks.



    OK, i've had no other feedback, so we'll go with that.

    OK. I understand. We're not looking for a 'consensus' diagnostic criteria.


    OK, thanks for clarification.






    OK, I've made changes to 2aii. Please see what you think of it now. I think it's an improvement on 2a.
    It's mainly just a change in wording, but with an extra bit of wording as well:
    You said that all patients should be researched, but I think that's totally unrealistic, so I've changed it to:
    (will be performed in a replicated manner on a representative selection of selected cohorts of patients in order to create the diagnostic definition.)






    I've added it for discussion.



    Thanks
  18. CJB

    CJB Senior Member

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    I've lost track of the format you're requesting for input, Bob, but I see this is still here, only now the explanatory language is in direct contradiction to my experience and I oppose it for all the reasons I cited before. After living with the name for 20 years, it has now become identified in my circle of professionals, friends and family as a legitimate serious illness. I object to the entire item, but "the strong dislike for this name amongst the patient community" doesn't reflect my views.


    For 2b I suggest that it is worded like this which solves all problems

    2b. And a new name/names for the illness/illnesses will then be created if required, based on the scientific findings. CFS will not be used for any of these illnesses due to the strong dislike for this name amongst the patient community because it trivializes the patients suffering, and because it has in the past been portrayed as a Psychiatric illness.

    So this means CFS will not be used, if it turns out to be just one disease it can be called ME if this term accurately describes the scientific findings, if it turns out that it is multiple illnesses then they will have to come up with new names and none of them will be CFS.
  19. Bob

    Bob

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    I disagree strongly with you here rlc. I consider these to be the only short term provisions that will improve our situation. Your proposals will take years to come to fruition, whereas CCC and ICC can be used immediately, improving research results at least a little, but a lot IMO. I strongly feel that they should be included, if only to send a message that the patient population want to see sub-setting in research.

    Also, we are only proposing them to be used in research. In my experience, no one objects to this sort of proposal for research, on grounds of it being divisive. But some do object to these definitions being widely used for clinical use.




    I'll leave that for you and Ember to discuss.













    I think you've jumped too many steps on this last point rlc. It's very hard for everyone to keep up with.
    I think we need to make incremental changes.

    I prefer 7, 8, and 10 to be separate, for various reasons.
    When separate, they are simpler, easier to discuss, and more striking.
  20. Bob

    Bob

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    rlc, thank you for all your feedback...

    But much much shorter posts in future please.
    It's almost impossible to respond so such long posts.
    But I have responded to every issue you've raised.

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