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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, take your time... There's no hurry... Your feedback will be incorporated whenever you can contribute. :)

    Yes, it will be a circular discussion for quite a while... It's inevitable it will be like that... And none of us have the best brains, so it might be a very messy process!

    But we'll get there in the end, if enough people remain involved.
     
  2. Bob

    Bob

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    So, should we remove the word 'compulsory', or should we change it to 'advisory'.
    Or should it be 'compulsory' for all patient to be offered testing.
    CJB suggests that making anything compulsory for doctors will backfire.


    Also, I have reservations about including specific names (Drs Byron Hyde and Dr Shirwan A Mirza), for all sort of reasons. It could be seen as a partisan and exclusive recommendation, alienating many patients and clincians and researchers.
    Also, Curruthers et al., and people like Klimas should be involved.
    So i propose removing specific names, unless we create a comprehensive list of names.
    Or we could just reference the various differential diagnosis lists, including the one in the ICC, and Hyde's and Mirzas.


    My alternatives for comment and feedback:

     
  3. Bob

    Bob

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    This is an old list, please see the latest list here:
    http://forums.phoenixrising.me/inde...r-what-should-we-do.17972/page-17#post-276827

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

    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.

    Alternatives 2a:
    2ai. 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 a representative selection of all cohorts of 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.

    2aii. A new definition should 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 should 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 etc, 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. From this information a new definition will be written, and further definitions, if it found to be more than one different illnesses.



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

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


    Alternative 3b:
    3bi. CDC should advise to doctors and insurance companies, that CFS should 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 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. Promotion of CBT and GET as therapies for CFS patients should be removed from CDC literature, toolkit and website.

    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 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.
     
  4. CJB

    CJB Senior Member

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    I think it's redundant.

    When considering issues of name, how we should be treated, etc., I think it's helpful to just look around at other diseases and how they came by their names and how the medical community changed its views. MS was considered hysteria for quite awhile. Autism was blamed on cold, uncaring mothers. We are not the first to suffer abuse by the medical establishment or society because of ignorance. Check out how Parkinson's disease got it's name. AIDS was once called gay cancer among other things.

    Things changed when discoveries were made that explained that which was previously unexplainable and open to speculation. That's what we need. Explanations. Anything we do should be a positive effort toward that simple goal.
     
  5. Bob

    Bob

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    If we are to take items no 2 forward, we need to be clear about what we mean about: "independently replicated science".
    What does that process involve? I think the wording needs to be more specific

    I think we should consider removing: "And a new name/names for the illness/illnesses will then be created based on the scientific findings.", because it raises all sorts of questions, or at least it should be made a separate point (2b), to be discussed.
     
  6. Bob

    Bob

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    OK, I understand where you are coming from, but I can't see any harm in such a recommendation.
    I don't even agree that it is 'redundant', but I think it could be helpful.
    I think that such a message sent out by the CDC, could be very protective towards patients.
    If you are strongly opposed, then I will delete it, but I ask you to consider carefully before I do.

    Edited: I change my wording slightly.
     
  7. Ember

    Ember Senior Member

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    Thanks for asking. And thanks for your post today: "Yes, take your time... There's no hurry... Your feedback will be incorporated whenever you can contribute."

    Please do remember that we are all at different levels of functional capacity and vulnerable to crash under pressure. Personally, I can't keep up with the pace. First I had to start printing out RLC's posts and reading them in small chunks. Then I had to stop reading on CBT, GET in order to focus on my own suggestion. Now I can't keep up with the action on my own suggestion.

    Added to the differences in capacity, remember too that we are in different time zones and have different commitments outside this task. Some of us sometimes sleep. Some are slower on the computer.

    The "one, objection...two, objections...it's out" process feels too rash to me, and makes it hard for me to trust that rational thought is prevailing.

    I want to be engaged/interested, but I fear for my health.
     
  8. Bob

    Bob

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    Hi Ember,

    Thank you for the helpful feedback.

    Yes, I'm aware that the pace is a bit fast and furious, but we can't do much about that, as there are a number of contributors. I'm finding it very hard to keep on top of the process, whilst also making my own contributions. I haven't really been contributing to the suggestions and wording as much as I'd like to, as I've just been trying to keep up with organising everyone else's contributions.

    But please be assured, that I will make sure that all opinions and contributions are included and considered fully, whenever they are made. So you won't be left behind. The pace is fast at the moment, but it should settle down a bit once we start narrowing down our suggestions to a favourite few. In any case, late contributions will carry equal weight, and we don't have a time limit.

    Maybe you should just focus on one or two items for now, if that's helpful, and then you can give feedback on the rest towards the end of the process. If an item is deleted now, it can be reinstated, or further discussed at a later stage, at any time. Please don't consider my actions to be the final word on any matter. You are always entitled to raise your own issues for discussion.

    Although I've taken a lead in organising the list, it's not my list, so your opinions have equal importance and status as everyone else's.

    In terms of "one, objection...two, objections...it's out"... It's not as simple or crude as that... Each point can be discussed until we reach a consensus, and that's what I've been aiming for. Most points that have been deleted have only been deleted after a number of objections, and if no alternative wording can be found. We have to narrow down our list anyway, so this is a good way of starting that process. But even if a point is deleted, it can still be discussed and reinstated if there is consensus.

    We have to reach a 'consensus' in this project, but that doesn't make it the final word on ME, as far as Phoenix Rising is concerned...This is just a single project that we are working on, as something that we can all agree on... And if you personally can't agree with anything that's included, then it won't be included.

    But because it's a 'consensus' project, then it means that if people cannot accept any of the proposals, after discussion, and after rewording, then they can't be included. We have to focus on other priorities instead. But because it's a 'consensus' project then everyone, by definition, will agree with the final points included.

    Well, I hope that helps explain the process that I have adopted. But like I said, I don't want to monopolise this thread, so if there are objections to any of this, or the way I have proposed doing it, then I'll be very receptive.

    Bob
     
  9. Bob

    Bob

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    I've reworded point 2a slightly. Feedback please:

    Original:

    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.

    Alternative:

    2ai. 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 a representative selection of all cohorts of 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.

    2bi. And a new name/names for the illness/illnesses will then be created based on the scientific findings.
     
  10. alex3619

    alex3619 Senior Member

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    Hi Bob, I think it should be. This would help address inadequacies in the rest of their site. I tend to discuss first propose second, which is why I have put these things as a discussion first. The reason is that I only have my own perspective on these, and I want others to be aware of why I am saying things, but I also want to see what others think before formulating a proposal. However this specific one might address many issues simultaneously.

    Bye, Alex
     
  11. Bob

    Bob

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    Thanks Alex, I like your suggestion.
    I've added it at the end of the list for others to consider and comment on.
    The wording can be tidied up later.

    It is sort of related to point no, 8, so the two should sit next to each other when we get around to tidying up the list.

    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.
     
  12. Ember

    Ember Senior Member

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    I'm not yet reassured about your process, Bob. You write, “If people cannot accept any of the proposals, after discussion, and rewording, then they can't be included.” What is the time frame for discussion and rewording? You also write “even if a point is deleted, it can still be discussed and reinstated if there is consensus.” But if a point has been deleted prior to thorough discussion, how can there be consensus later on reinstating it for purposes of discussion?

    So I'm asking for clarification concerning the time frame for discussion and rewording.

    I wake this morning (exhausted) to read your post to Mary:
    The ICC and CCC are both clinical definitions. Must we then be restricted to making suggestions only about Fukuda, the only exclusively research definition we have, and/or to making suggestions about only half of the ICC? Remember that the CCC is now in the IACFS/AC Primer for strictly clinical purposes. Can't I make a suggestion concerning the CCC?

    I'm not reassured to learn that if I "can't agree with anything that's included, then it won't be included." Perhaps I need to give the issue a little more thought before I'm given such power to overrule. Consensus should come after discussion, not before.

    Again, I'm asking for some reflection on timelines in order to have an inclusive process. What is the time frame for discussion?

    You write: "We have to reach a 'consensus' in this project, but that doesn't make it the final word on ME, as far as Phoenix Rising is concerned..." How many times have I heard on this forum that we can't discuss an issue because we couldn't reach consensus on it in the past? We're willing to maintain that position even in the face of new evidence. A dangerous result is that we become willing only to reinforce our earlier beliefs.
     
  13. Bob

    Bob

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    It's all consensual.
    There is no time frame.
    If I cross something off the list, it's provisional, based on ongoing discussions.

    I think I understand where you are coming from Ember.

    On the particular issue that you are interested in, I have been fairly quick to cross through some items, because I know from bitter experience, that there is not a consensus on this forum regarding separating CFS from ME in a clinical sense.

    From my past experience, I know for an absolute fact, that you will not get a consensus for that suggestion.
    I could name a number of members who are completely opposed to a clinical separation, and my guess is that there would be a very large number.

    If you read through the thread that I gave you a link to earlier in this thread, then you'll understand why.
    http://forums.phoenixrising.me/inde...erence-between-me-and-cfs-to-the-public.9591/

    That's a long thread, so I don't expect you to read it, but I promise you, that if you include a suggestion re clinical separation of CFS and ME, there will be bitter outrage from a number of members of PR, and very strong opposition.

    That doesn't mean that you are wrong and they are right... It's just a deeply held difference of opinion, which every one has different reasons for holding.

    If you want to include such a proposal, then it needs to be worded in such a way as not to offend people. And my guess is that you won't be able to. So my suggestion is to avoid clincal recommendations, and just to include research recommendations with regards to name and diagnostic criteria. But that's just my suggestion. You don't have to follow my suggestion.


    No, you aren't restricted to making recommendations just for Fukuda... We have already made research recommendations with respect to CCC and ICC... And the CCC are already widely used for research.




    Yes, the process is such that if a member does not agree with an item, then it will not be included.
    But obviously, there's got to be an element of trust that no one is going to abuse the process, and that everyone will come to the project with integrity.
    Yes, you do have power to veto, but I know that you will use your judgement with consideration.
    And yes, consensus comes after full discussion, however long it takes, as I've made clear.
    The process won't end until everybody is happy with the outcome.
    But it's an experiment, and it might not work, ultimately.

    Remember that no single person can decide what text we include, but every single person has the power of veto and can decide what is not said.
    So the end result will be such that you will be happy with what is included, even if you are disappointed that some things were not included.

    Ember, this process is not going to be perfect, and it might not be worth our energy in the end.
    But if it works, then that would be great. If it doesn't, then it doesn't.

    On the particular item that you are interested in, it's a sticking point, but if you can find a way around the sticking point, then that's wonderful. (It's up to you to convince everyone on this thread, and on the forum, that your own suggestion is not offensive to them, and that it should be included.)



    No time frame. Open ended discussion. All contributions are equal, except consensus has to be agreed by all.





    I don't know what you mean here Ember... I don't understand what you are getting at.


    Like I said, anything can be raised in this process, and anything can be dismissed. It's a fluid process. I understand that you are struggling to keep up, but that doesn't mean you are left out.

    If you want to bring an item back for discussion then please do, at any time.
    Please don't feel under pressure, hassled, rushed, left out, or outnumbered.
    Every single one of your points will be considered, along with all other contributions.
    And you are able to respond to all of our discussions at any time. You don't have to respond immediately.

    I wouldn't invest too much of your energy in this Ember, as it might come to nothing.
    And it's not yet an 'official' PR thing that we are doing.
    Let's just see how it does, while people are still involved.


    If you've got a better system for reaching a group decision then please go for it.
    I'm only doing this while it works, and while people are on board.
     
  14. jspotila

    jspotila Senior Member

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    There's no way the CFSAC can pass that recommendation, and if they did the answer would be no. CFSAC can't legitimately say that HHS should fund research on a specific drug and dictate who the researchers coordinate with. That's outside the bounds of NIH's peer review process and FDA's process for drug trials.
     
  15. Bob

    Bob

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    OK, that's two opposed for that item, I'll cross it off, awaiting further feedback/discussion.
     
  16. jspotila

    jspotila Senior Member

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    Ok, I think it's important to think through how a request will be operationalized. Sorry to go all lawyer-parsing-sentences on everyone. o_O I apologize in advance if some of what I point out has already been discussed. I can't keep up with all the detailed responses in the thread.

    "independently replicated science" - what does this mean? Replicated in the sense of a second study published by a different group making the same finding? Does it have to be published? What about characteristics that researchers/clinicians generally agree upon?

    "all the testing to rule out all other diseases" - That's hugely broad! ALL other diseases? Since you don't mean every disease ever known to humankind, which "all other diseases" do you mean to include? Is it the same list for every patient? Or is it dictated by symptom presentation? And what if another disease IS found? Can someone with gall bladder disease not be diagnosed with CFS?

    "differential diagnosis list and testing requirements . . . article 1a" - What if we don't like the list they come up with for 1a?

    "all physical anomalies" - Again, every single anomaly? Does it have to be published to make the list? What about signs that clinicians agree on that have not been published? How is the evidence for the anomalies to be weighted? Should the fingerprint anomaly be included? How do we know that anomaly has diagnostic value?

    "SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH" - That's a lot of very very expensive (and in some cases unpleasant) testing.

    "will be performed in a replicated manner" - what does this mean? That two different cohorts must be selected? That two different groups should perform the testing on the same group?

    "representative selection of all cohorts of patients" - What does "all cohorts" mean? Who will select them? By what criteria? How many patients?

    "From this information a new definition will be written" - How does 2ai differ from CDC's described study with the 7 clinicians using their own criteria? Is this proposal materially different? Will it produce different results? And who is supposed to oversee the process?

    :sleep: Ok, back to the couch with me.
     
  17. Ember

    Ember Senior Member

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    In response to your earlier request for input, I offer my input: that in view of the fact that we are a patient community, we find a way to slow the process down in order to be inclusive. I suggest time-out/catch-up periods. We don't know how many more people might be able to contribute if they had time to read and reflect.

    On a separate issue, given the new publication regarding the ICC and CCC in this month's Journal of IiME and given the fact that few of us seem to have been aware of the CDC statement concerning ME and CFS case definitions, I ask for an open-mindedness in our discussion. I protest the striking down of wording, such as happened this morning, on the basis of earlier discussions. (If Mary agreed to having her wording struck down, then I missed that post.)

    And all of that is said in the context of applauding the work that you are doing, Bob.
     
    jspotila likes this.
  18. Bob

    Bob

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    Yes, I think it's a good idea to slow down. We don't need to hurry.
    Although we do need to keep everyone engaged in the process, so I think it's best not to let this thread fizzle out.
    Also, I need to keep up with what everyone else is doing, and keep on top of it all, or I'll loose track, and it won't work. So I'm not able to slow the pace down myself, because it's too confusing for me if I don't respond immediately. But others can certainly take their time to contribute.


    Ember, as I've said, please consider the list provisional, and any striking of wording provisional.
    It's just a reference sheet at the moment, and everything on it is fluid, and just for us to refer to.
    If I cross something out, it's because that's where I think we are up to in the conversation.
    You are free to raise any issues at any time.
    Please reopen a specific discussion, or re-suggest an item, if you want to, and then we will respond to your specific points.

    Like I said, please do not feel shut of the discussion because you missed something during the night.
    You are welcome to ask for any actions to be changed.


    Thanks for the feedback, Ember :)
     
  19. Bob

    Bob

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    I hear what you say about open-mindedness, and about full discussions being allowed to play out.
    And like I said, any striking out is provisional, and open to further discussions.
    It's impossible for me to keep a track, if I don't respond to comments that oppose an item.
    I crossed out that particular item only after discussion, and after two or three protests on this thread, including my own opposition to it.

    Honestly Ember, I know the strength of feeling that there is about separating ME from CFS on both sides of the argument. In that thread that I referred you to, there was a storm of controversy, and a lot of bad feelings were caused just because of the suggestion that you are making. It took us about 500 posts to discover that we could not reconcile our differences, although we certainly did come to understand our differences.
    No one changed their mind about that particular issue, as far as I remember, but we certainly did discover a lot of stuff that we didn't know before.

    I can't face repeating that particular discusison again. It's too exhausting, only to come to the same conclusions.
    So I ask you to have a little look through that thread, so read some of the extremely strong protests at the suggestion that you want to make.

    Again, of course you are free to have that discussion here, and to raise any issues, but I ask you to be aware of the issues and feelings surrounding what you want to suggest.
     
  20. Bob

    Bob

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    Edit: see my next post for a reworking... maybe you can ignore this post....
    _______________________________________________________________

    Yes, we need to address these issues.


    Yes, it's very vague, and I think we will have trouble trying to define what we mean here.
    I just don't have the expertise to recommend how a diagnostic criteria should be created.




    "All other diseases" refers to the differential diagnoses list that is explained in items no 1.
    So as it refers to the list that should be created if item no. 1 is implemented, then it doesn't need further explanation here. Although it could be worded better.


    Well, we just can't win with the CDC can we.
    I can't think of a better way for demonstrating how a diagnostic criteria should be created.
    If anyone else can, then please do.




    How about "all such physical anomalies"?




    Yes, agreed, we are really coming unstuck once we start to define how a diagnostic criteria should be devised.
    We'd end up writing a dissertation, to get it right.
    Still, we could have an attempt at a simple request whilst making it clear what we want and what we don't want.


    Is this too much to ask for them to create a diagnostic criteria using these tests on a selection of patients?





    No idea :)

    No idea :)

    No idea. And no one knows what the CDC are doing.


    see my next post....
     

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