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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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    Yes, even better, if you are OK with that?

    "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 and its predecessor, the Canadian Consensus Criteria, as case definitions for ME, distinguishing ME (ICC, CCC) from CFS (Fukuda)."
  2. Bob

    Bob

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    I'm taking a break now. Look forward to any responses.
  3. Ember

    Ember Senior Member

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    No, no. Not a slash! (We know about slashes...:()

    I had edited it to a comma: (ICC, CCC).

    (A well-deserved break.)
  4. medfeb

    medfeb Senior Member

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    I could be an outlier on this but I think the real issue here is the continued use of the terms CBT and GET, terms that have different meanings to different people.

    For CBT - there are lots of literature references that talk of CBT (or at least one element of it) being about removing false illness beliefs. So as a clinical practitioner who has read about CBT, I am probably bringing that idea into my practice. Further, while we often hear about how CBT can be used in other chronic illnesses, the reality is that the overwhelming majority of references to CBT on the CDC web site are for 3 conditions - CFS, dealing with trauma and dealing with violence. Beyond those three, there is a reference here and there for depression, anxiety, etc. Therefore, I would prefer a recommendation for the removal of the term CBT and replacement of it with the term "Coping" or a similar term

    About GET - Correct me if I am wrong but I think we might have a similar situation with GET. I've seen GET described as exercising to a set amount of time or a set amount of reps. And while the descriptions talk about building up slow, I haven't seen them talk about how you establish a safe baseline. Obviously bad for someone with ME.

    But I also know that Klimas and I believe some others have recommended very controlled activity/exercise for ME patients - based on an individualized assessment of their level of impairment using tools like VO2Max and an individualized plan for how they can do it safely. My son is one of those patients and he is able to do some carefully controlled non-aerobic activity/exercise. So my question - is the problem with the idea of controlled activity/exercise or is the problem with the term GET and its inability to articulate the extent of care that must be taken to develop an individualized activity plan. Rather than just saying 'remove GET', what would people think about recommending that the term be replaced with a better articulation of how activity should be recommended.

    I can suggest wording if people are amenable

    Can we revise this to state "The CDC should remove all information from the CDC website". Don't know if it exists elsewhere but I assume we don't care about CF if its in other parts of the CDC website.
  5. Ember

    Ember Senior Member

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    Does anyone know the list of clinicians currently providing data for the new CDC case definition? I think Dr. Klimas and Dr. Kogelnick are among them. I'm just curious to know who (at least for that purpose) the CDC doesn't consider "fringe."
  6. Ember

    Ember Senior Member

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    Or how about "distinguishing ME (ICC, CCC) from CFS (Reeves, Fukuda)."
    Bob likes this.
  7. Valentijn

    Valentijn Activity Level: 3

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    I don't think it's enough to remove GET from the CDC website, etc. Too many doctors have already been polluted by those sources, and the crappy research about it would still remain. I think there should be a warning that GET is rarely beneficial and/or it is likely harmful for many/most people with ME/CFS. Dunno if they'd be willing to go that far though :p
    Bob likes this.
  8. alex3619

    alex3619 Senior Member

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    HI Valentijn, I agree with you. I am coming to the view that what the CDC needs to do is remove all outdated recommendations. In addition, they should produce a state-of-knowledge article, updated annualy, that discusses all these issues including the use of CBT/GET, definitions, etc.That way the older research and current views can be put in perspective. Maybe they could do this as an annual review article to be published? That would fit with their mandate I think.

    CBT in its original form is about modifying problematic thought processes, ones that increase distress. The CBT practiced for CFS in the UK and parts of Europe use the same technology but the goal is to treat and cure CFS (and they claim ME is the same) as a psychosomatic illness that derives from almost delusional thinking - they have an unproven model of how dysfunctional beliefs can perpetuate CFS. I have no problems with the use of the older style CBT for assisting with stress management.

    Bye, Alex
    Bob likes this.
  9. rlc

    rlc Senior Member

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    Hi Bob RE
    Totally agree, that is on oversight on my behalf of course it should be like that so I will change it.

    Re the troublesome no 7


    I think it should read

    7. The strong emphasis of the use of CBT as an effective treatment for CFS will be removed from the CDC website. It will be replaced with, Psychological help maybe needed for some CFS patients, to help with the emotional issues of having a serious physical illness, but CFS is not a Psychological illness. And GET will be removed from CDC literature, toolkit and website.

    This then gets rid of using the dreaded CBT term that is so negatively associated with CFS thanks to the Wessely School, and just replaces it with psychological help cause all some people may need is a bit of help from a councilor!

    And clearly states that CFS is a serious Physical illness. We have to accept that the genie has been let out of the bottle and a large number of doctors now think CFS and ME are psychiatric illnesses. So it is very important that this false belief is contradicted on the CDC web site by clearly stating that CFS is a serious Physical illness. Which is why we need 3a, b and c achieved as well.

    Personally I have no stronge objections to all instructions for psychological help being removed from the CDC web site, if any doctor picks up that a patient is struggling emotionally from dealing with a serious physical condition and doesn’t recommend counseling then they are a dim wit who shouldn’t be practicing medicine.

    But we will be negotiating this with the CDC, so we may have to give a little to get the main jist of what we want achieved! So I’m happy with psychological help, as long as we get, CFS is a serious Physical illness, then patients can tell any doctor that is telling them that they are nuts that the CDC says that they are not!


    I have been thinking about this, it is far too unspecific and doesn’t define properly what we want to be removed, and we are leaving the CDC to try and work out what we mean! I have spent some time looking at most of what is currently on the CDC site and there is not too much psyc babble apart from the sections on CBT and GET.

    So what I would propose is that we drop 8 for the moment, and that people look at the CDC site and find what it is that they object to and then we can discuss what people find and come to some agreement as to what we think should be removed, so that then 8 can become something like paragraph whatever on page whatever etc are to be removed from the CDC site, for whatever reasons.

    RE
    Just a word of warning on this, no matter what people chose. I believe and nobody has objected so far that we need a new definition based on replicated science as outlined in 2a, Now ideally we want this proposal accepted as soon as possible, and started as soon as possible, if it is, it would take 3-6 months to organize and then work could commence and everything completed from start to finish in say a year, year and a half.

    BUT there is a limit to the amount of funding that could possibly be made available, if we advocate for 4 and 5 as well as 2a, it is very likely that we will shoot are selves in the foot, and what we will get is the CDC saying things like “we are going to be doing a study using Fukuda and CCC to look for NK cell dysfunction and this will take two years, (but they won't be ruling out all other diseases!) and we will be doing a gene studies using ICC and Fukuda this will take two years, and oh by the way there is no money to do 2a, and won’t be until we’ve finished these, and we have several other studies we want to do first so we’ll get round to doing 2a by about 2020 maybe. And they can do this without breaking the terms that we have outlined, so it will be are fault!!!

    If our goal is just 2a then most research money and effort will go into that, with some allocated to Retuximab and related pharmaceutical research.

    Just advocating for 2a means that we will be just advocating for the correct scientific process that will solve all are problems to be done, it will also side step the problem that I see happening were the CDC will just refuse to use CCC because they have for the last nine years!

    Anyway something for people to think about.

    I think we should make some adjustment to 4

    .

    It should read

    4a. CFSAC should recommend that the CDC provide information on myalgic encephalomyelitis (ME), as defined by the WHO, which the CDC acknowledges as a separate disease on its own website.

    4b. And that the ME-ICC definition is used until such time as the science in articles 2a and 2b has been done and a new definition has been created.

    I can see the CDC strongly objecting to the ICC, but if it is just an interim step until a new definition is created they are far more likely to agree to it.

    Let me know what you think

    All the best
  10. Bob

    Bob

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    Ignore this list now - I've posted the updated list later in the thread, here:
    http://forums.phoenixrising.me/inde...r-what-should-we-do.17972/page-14#post-276651

    -------------------------------------------------------------------------------------------------------------------
    1a. An independent panel of Diagnostic experts will be created to write a 100% complete differential diagnosis list of all other diseases 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.
    Drs Byron Hyde and Dr Shirwan A Mirza because of their track record in finding the misdiagnosed patients in the CFS group must be included in this panel either directly or as consultants.

    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 have 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 two definitions, if it found to be two different illnesses. And a new name/names for the illness/illnesses will then be created based on the scientific findings.

    2b. 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.

    2c. 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 All US CFS and ME patients will be given the legal, medical and insurance rights that other patients with a serious Physical illness have.

    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 should recognize the ME-ICC and its predecessor, the Canadian Consensus Criteria, as case definitions for ME, distinguishing ME (ICC/CCC) from CFS (Reeves, Fukuda).


    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.

    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.


    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. 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.

    Alternatives 7:
    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.

    7ii. 7. 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.)



    8. 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.
    (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 should 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 should 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, should be clearly marked as outdated.

    8iii. The CDC should 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.


    New:
    10. The CDC should 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 should be an annual review article to be published.
  11. Bob

    Bob

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    Mary, do you mean change it to the following?:
    "The CDC should remove all information from the CDC website based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS."


    And what do you and others think about this:
    "The CDC should remove all information from the CDC website, CDC literature, & toolkit. based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS."
  12. Bob

    Bob

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    Yes, you're not an outlier on this Mary...

    I personally do not want the CDC to include anything about CBT, GET, incremental exercise, emotional coping mechanisms etc., on their website. They will only get it 100% wrong all the time.

    If we were to suggest including anything, then we'd have to be extremely specific with what we consider acceptable and unacceptable.

    Doctors don't look into the subtleties of different kinds of CBT or into the fine details re GET. For most doctors, a CBT therapist is a CBT therapist, and so patients will have their illness beliefs challenged. And GET will equate to getting out and exercising (i.e. that the patient should "get up of your backside" or "get a life"'.)

    Personally, I can't accept suggesting that the CDC keeps CBT or GET on its website.

    But I would definitely consider alternative wording re 'emotional support' instead of CBT, and re "very controlled activity/exercise for ME patients - based on an individualized assessment of their level of impairment using tools like VO2Max and an individualized plan for how they can do it safely."

    The trouble is, again, though, that 'emotional support' will be misinterpreted to mean that ME is an emotional illness. In any case, 'emotional support' should be offered to everyone with a serious disease, shouldn't it? So I'm not sure about including it specifically for CFS on the CDC's website, unless they automatically include standardised wording for all diseases on their website.

    And any plan for very controlled activity will not be properly interpreted or implemented by either the CDC or regular doctors. Not in the way the Nancy Klimas administers it. It will be trashed, and reinterpreted as meaning "get out and exercise."

    So I think we are wasting our time with both, and I think our priorities should be elsewhere.

    My preference is to just ask the CDC to remove all reference to both CBT and GET. They might ignore this request, but it sends out a strong signal. And, as I said earlier, CBT and GET only help 13% of patients, as per the PACE Trial, leaving 87% unhelped. Many harmed patients are also harmed by CBT and GET, as per UK patient organisation surveys.

    So the evidence suggests that they should remove all reference to CBT and GET, as they are unhelpful at best, and harmful at worst.
  13. Bob

    Bob

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    I think it's people like Klimas, Peterson, Bell etc. But I don't know for sure, except Klimas is definitely one of them.
  14. Bob

    Bob

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    I agree...

    My suggestion is:

    7. 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.)
  15. Bob

    Bob

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    Alex, is that a proposal/suggestion? (I like it):

    > The CDC should 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 should be an annual review article to be published.
  16. medfeb

    medfeb Senior Member

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    Oops - I meant to say that The CDC should remove all information from the CDC "CFS" website ...
    Thanks, Bob
  17. Bob

    Bob

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    I think some us feel strongly that references to emotional support should be removed and that CBT should be strongly condemned esp as a primary treatment. Of course, any doctor should be able to offer their patients emotional support anyway.


    Yes, that's my opinion as well... A good doctor should be supporting their patient in any appropriate way.

    Thanks for clarifying your opinion... I think we'll go with asking for CBT and GET to be removed, if no one objects.



    OK, I'll place a 'provisional' mark next to point 8 on this list, with a suggestion that we are more specific.
    But maybe we could request for a systematic review for information to be removed (or clearly marked as outdated.) I think that's what people were thinking of.




    OK, well we are going to prioritise our suggestions at the end of the process, so we can leave it until then.
  18. Bob

    Bob

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    Ah, it makes sense now! :)

    What do you and others think about this:

    "The CDC should 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."

    Or

    The CDC should 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, should be clearly marked as outdated.
  19. Bob

    Bob

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    Ignore this list now - I've posted the updated list later in the thread, here:
    http://forums.phoenixrising.me/inde...r-what-should-we-do.17972/page-16#post-276701

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

    Current list, with alternatives to decide on:

    1a. An independent panel of Diagnostic experts will be created to write a 100% complete differential diagnosis list of all other diseases 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.
    Drs Byron Hyde and Dr Shirwan A Mirza because of their track record in finding the misdiagnosed patients in the CFS group must be included in this panel either directly or as consultants.

    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 have the testing recommended in the guide that is created by this independent panel.


    Alternatives 1:
    1ai. An independent panel of Diagnostic experts will be created to write a 100% complete differential diagnosis list of all other diseases 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.
    Drs Byron Hyde and Dr Shirwan A Mirza because of their track record in finding the misdiagnosed patients in the CFS group must be included in this panel either directly or as consultants.
    Clinicians and researchers* who have already created differential diagnoses lists, or havetrack record in finding the misdiagnosed patients in the CFS group, should be consulted or included in the panel.
    (*References = Byde/Hummingbird info, Mirza's work?, ICC, and any others?)

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


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




    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 two definitions, if it found to be two different illnesses. And a new name/names for the illness/illnesses will then be created based on the scientific findings.

    2b. 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.

    2c. 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 All US CFS and ME patients will be given the legal, medical and insurance rights that other patients with a serious Physical illness have.

    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 should recognize the ME-ICC and its predecessor, the Canadian Consensus Criteria, as case definitions for ME, distinguishing ME (ICC/CCC) from CFS (Reeves, Fukuda).

    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.

    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.


    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. 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.

    Alternatives 7:
    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.

    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.)



    8. 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.
    (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 should 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 should 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, should be clearly marked as outdated.

    8iii. The CDC should 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.


    New:
    10. The CDC should 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 should be an annual review article to be published.
  20. Bob

    Bob

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    England, UK
    OK, I'm going to have another break now. Later, I'm going to start trying to refine some of the wording in our list of items. We need to be more specific in places, and to clarify what we mean in others.

    Then we need to start prioritising our list of items, and discussing which we think carry most meaning for us, or are most likely to see a result. Everyone needs to be engaged in that process.

    Keep the feedback coming please.

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