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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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    Thanku, I've changed that wording.

    But, just out of interest, could you clarify exactly what you mean...
    Proportions who were harmed by CBT and GET, in the surveys, were quite high.
    Do we have similar data in research settings? (There might be plenty, but I've only studied the PACE Trial closely.)
    We don't know what the harms were in the PACE Trial because they didn't include the deterioration rates.
  2. Bob

    Bob

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    That's exactly the sort of direct feedback and input that I want, thank you CJB.

    I know you are not alone in expressing those concerns, and it is a very contentious issue.

    I have removed references to 'CFS' in 2b, but it is open for discussion.
  3. Bob

    Bob

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    I'm getting a little overwhelmed by the process now.
    I might need to take a little step back for a while to get some perspective, and to get an over-view of what we've done so far.
    Now for some rest, and some sleep.
    Take care all.
    ukxmrv likes this.
  4. rlc

    rlc Senior Member

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    Hi Bob, RE
    My thought are, that because we have stipulated that a literature search must be done for (Physical) Anomalies we have made it very clear that we are not asking for any psychiatric literature to be read, and the rest of the tone of everything else we are saying is completely against these diseases being seen as psychiatric! There is no need to include biomedical research or we are saying the same thing twice. But biomedical can be included if it makes people happy but I don’t see that it is needed.

    RE the insurance companies I have no idea if the government in the US can tell them what testing they should be doing, but surely the government must have some say over what the insurance companies can do??!!!

    So if any knowledgeable Americans can advise on this please do, otherwise one of us will have to spend some time Goggling it.

    RE
    I doubt that the CDC can but I would say that someone like the NIH can do this, it is compulsory for things like a patient with TB symptoms to be tested for TB if doctors don’t they get struck of for malpractice.

    So I don’t know who is responsible for making tests compulsory but someone obviously can.

    So once again any knowledgeable Americans please advise,

    I think that because we are making it compulsory to be offered the testing; it shouldn’t be a major problem.

    RE
    I covered this in my last post and put things we can reference for Dr Hyde, I think it is essential that we do mention the individual names of Dr Hyde and Dr Mirza, because they are mentioning things that need testing that no other source has mentioned, Even if this just leads to the new independent panel reading their work so that they are aware of these issues and consider their recommendations it would be very good.

    I think I have updated to the new version of 2a in my last post?? If not I can update it

    This is fine by me, I think I have got a bit jumbled up in my last post and used a older version so ignore that this bit is fine the way it is written above.

    But I do think that the proposal that we stipulate that CFS/ME clinicians will be rejected out of hand by the CDC and I have outlined many reasons why we should not do this in my last post.

    I strongly recommend that we go for the first version or else it will be rejected and we will achieve nothing!!!

    RE 2b I have made suggestions for a new way of wording this in my last post,

    RE 7 I think it should be rolled together with 8 and 10 as I outlined in my last post.

    And I think we should drop 4 altogether for the reasons I outlined in my last post. I know this will be controversial, I have wanted ME recognized as a separate illness for years, but the CDC will certainly reject this proposal, and will be so pissed off that they will probably reject everything we suggest, so I think we should drop it and wait for the science in the replication study to provide the answers, rather than risking everything for a short term gain that will also leave a large section of the patient community out in the cold and pissed off.

    RE new additions I don’t think that 11 is needed and only makes the list to long, as long as we get CFS recognized as a serious physical illness and doctors and insurance companies are told this, what are they going to be educating them about? We don’t have the science to say what treatments should be recommended so nothing can be recommended because it may harm the patients, CBT and GET are going to be gone so we don’t need to worry about idiot doctors recommending that, and all the co morbid conditions like vitamin deficiencies will be picked up by doctors doing the testing in the new differential guide. As I see it we will have got rid of all the main problems and we just have to wait for the science to be done until anything else can be recommended.

    I think once we have these changes in place, then it would be a good idea to educate the public etc, but the CFSAC can be asked to do this separately, my concern is that we have to keep the main proposal simple or it will get rejected! And other less essential ideas can be given to the CFSAC separately.

    I think 12 should go as well from are main proposal, because it should be kept simple. Once we have are main proposal excepted, patients will be being diagnosed based on having all other disease ruled out using the new differential guide, not on whether they fit dumb Reeves surveys guides, so this problem will be resolved by having the main proposal accepted.

    I think that covers all your questions anything else let me know.

    I’m stuffed so I’m going to take a break for a bit.

    Thanks again for all your work bob, you are a legend!!!!!!!!!!!!!!
  5. rlc

    rlc Senior Member

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    Hi bob, RE 5 because this request is only going to be for government research, and because the CDC have a long history of refusing to use the CCC and I see no chance whatsoever that they will change this stance, and asking them to use the CCC and ICC will only antagonize them.

    And because independent researchers like the CFI are already using the CCC, so work is already being done anyway, so we have already got what we want being done by other groups. How about if people still want 5, we word 5 something this.

    5. More research funding for the biomedical model of this illness, Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population. Every effort will be made to rule out all other known illnesses and when the differential diagnosis testing guide in article 1a is created it will become mandatory that this is used in all government research to ensure a pure cohort.

    If they are ruling out all other diseases properly, this will ensure that they will be studying, the ME, CFS population, so something useful will come out of their research. And it avoids them rejecting the entire proposal because they don’t want to use the CCC and ICC. Which other independent researchers are using anyway. This way we get the best of both worlds.

    Let me know what you think

    All the best

  6. Bob

    Bob

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    Thanks rlc, I'm going to leave no. 5 in there for now, because it is important for many people.
    When we get around to discussing priorities, then we can discuss whether that should be included or not.
    I think that your new version of no. 5, above, is covered in nos 1 and 2 anyway.
  7. Bob

    Bob

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    Current list (work in progress) (with alternative versions and different wording to decide on):

    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. 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 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, (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 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).
  8. Bob

    Bob

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    The current list is posted just above.

    I'm going to take a break from the process today, because my brain is on a go-slow today, and it's been very intensive to keep on top of this over the past few days. I didn't mind that for a short while, but I can't keep up that level of work any longer, as I have other things to attend to.

    I think this is a good time to have a break anyway.
    To give my brain a rest, could we stay away from the details for a little while please.
    That will allow everyone to catch up with it, as well as give me a break.

    I realise that this isn't a perfect process, and it was an experiment anyway.
    So I know that some people will not have been impressed with the list, but will not have said anything, and others will have stayed away from this thread.
    But in an open forum process like this, I don't think we can do much better.
    It's been very hard to constantly change the list, taking into account all opinions, and I know that many people have accepted compromise rather than arguing over details.

    Later, I'm going to read over what we've created and see what I think of it myself.
    I haven't been able to step back from it to use my own judgement, because I've just been coordinating other people's input, so I've not idea what the list looks like, as a whole.

    I'd quite like other people to think about the project as whole now as well, and to forget about details for a while.

    So I'd like the next steps to be as follows:

    I'd like any lingering objections to any of the items to be raised.
    Please don't feel shy, as this is the most important part of the process.
    All opinions are equal, so please don't think that if other people have expressed strong opinions, or sound too knowledgeable to disagree with, that your opinions are are less valid. Even if you have hesitant objections, I'd like to know, because it's possible that a number of people think the same thing but haven't said anything.
    I don't want the loudest voices to dominate this project.
    Even if it looks like we've done a lot of work, and so you are worried about saying you don't like it, it doesn't matter. We need to know everyone's opinions.
    This is really important that we get feedback from everyone who has an opinion.

    Then I'd like people to think about the following...
    Is this list, or part of it, to be a letter to the CFSAC from Phoenix Rising?
    If so then should we include the whole list, or just prioritise a small number of the items? (No details yet please - just general thoughts)

    I'd also like anyone to let me know if any of our items contradict the letter from the organisations that was discussed earlier. As has been discussed, I agree that our letter should only reinforce that letter, and not contradict anything. (That doesn't mean that we have to agree with everything on that letter in order to not contradict it.)


    So, if we can forget about the details of wording for a while to give my brain a rest, it would be nice to have some brief general discussion regarding the whole project, as an overview, now that we've got some details down on the page.

    Positive and negative feedback is welcome. If people don't want any of these issues raised in the name of Phoenix Rising, then we need to know about it, if it is to be written on behalf of the whole of PR. Please don't be shy about disagreeing with anything, or feeling that you are being a nuisance (you're not), or about being controversial. This is an inclusive project.
  9. CJB

    CJB Senior Member

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  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Bob, on the wording about not using "CFS," might I suggest a more scientific response.
    "Because it has been confused with psychiatric illness" is good. You show it is giving inaccurate perception. And naming, even for scientists, should be about conveying accurate understanding. Might have wording of "because it is confused with general chronic fatigue and because it is scientifically inaccurate as fatigue is just one of the symptoms and cognitive impairment can be just as limiting. Also, it does not reflect what the WHO and a consensus of research shows that this is a neurological disease. A name based on the pathology instead of symptoms is in harmony with the naming of most other diseases and should be the model for naming this disease."

    A little long, I know. But, others can work with this if you want. The point being that these scientists are trained to not care about the personal impact of what they do. They are trained to care about what is accurate scientifically, no matter the impact. It's about truth and accuracy according to what the science says. So, I would appeal to them on their level.
  11. Bob

    Bob

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  12. Bob

    Bob

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    There's a few issues with this Tina, in terms of a consensus.
    The first is that some people simply do not want Fukuda CFS renamed at all, for various different reasons.
    Some are familiar and comfortable with the name CFS, and others do not want ME and CFS to be conflated.
    People have extremely strong opinions about it, on both sides of the argument, and I don't think that they are reconcilable.
    So, as usual, in this project, I think we should just stay away from talking about specific names, except in relation to specific diagnostic criteria that we want to be used for research.

    Personally, I'd love to see the term 'CFS' got rid of, and consigned to history, but we have at least two objections to that on this thread, and lots more on the wider forum, and I do understand the various points of view.
  13. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Ok, I have some concerns here.
    The CDC is already doing 1a. They have seven physicians, including Bateman, Klimas, Peterson, Kogelnick and others coming up with a new criteria. Of course, it will include how to exclude other diseases. Before making this recommendation, I suggest finding out more about what they are doing and then if you want to influence what details are included, you can make a recommendation to that effect. I can't tell if you just don't know what they are doing or if you are saying what they are doing is different than what you want and so you want them to start over. It's taken a year for them to get to this point in the process. This is U.S. government. So they had to put out the call, ask for bids, and then go through the process of choosing which ones will participate and get them to sign the contract. Now, they are getting data. And even one year into that process, Dr. Ermias Belay is saying it will be two more years before completion.

    If you guys want the CDC to start over again, then we are looking at another 3 years from the point they start. And getting them started might mean their finding the funding for it, which may add another year.

    As for 1b. You should know, in the U.S., no government agency can make any medical procedure or test compulsory. Every doctor and patient makes his own decision. And then it is up to the patient or insurance company to pay for it if they choose to do it. You can say that these exclusionary tests are to be included in the guide as to how physicians diagnose the disease. Again, though, I am sure this is part of the process of what they are doing as they already have exclusionary tests on their website. It may not include all the ones you want, but there is no guarantee the new list will, no matter which independent physicians they choose.

    Under 2a. are you saying that the new definition must exclude those who test positive for other disease. This is a real problem, if I am understanding it right. I have hypothyroid. It is being treated now and is under control. Does that mean I will not have this disease under the new diagnosis? What about someone I know which high blood pressure and has ME/CFS. If this is not what you are indicating, then you might want to reword. Maybe you can say the definition for research is to be narrow to get a pure cohort. Any research definition so as to include those with other diseases with similar symptoms should be rejected.

    And this statement: "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."
    Do you realize how long that will take? This may already be part of their effort to get a new diagnostic criteria. My understanding is that it is not. My understanding is that the seven clinicians will submit what they feel is the best criteria to diagnose someone with the disease (not using an existing one, but based on what they see and judge from tests and signs and symptoms). And then they will work to find consensus among the seven. I don't know if they will then do a study to see if the patients all have the same test results. If they do, then they would have to get a control group. If you are talking about adding this to the current project, then you are adding another six months to a year, I'm sure. That takes us to three years before we get one. If you are talking about starting from scratch, then it will take two years, and again, they will have to wait or search for funding.

    This also seems to assume there will be one consistent biomarker. And that is likely not going to be the case. This is not the case with lupus and with MS. (The MRI does not always show abnormal for these patients. It fluctuates.) If you choose 30 ME/CFS patients and 30 healthy people and run the proposed tests, what if one of the patients shows up normal that day? Then we have more delays as they try other things.

    I would drop this part. I trust Peterson, Klimas and Bateman, who have all been seeing and testing these patients for decades, to say what abnormal tests work in making a diagnosis. We don't have to tests their conclusions, they have decades of first-hand experience.

    I am sorry, I don't have time now to review all the others. I have to go write for money now. Maybe I'll have more time later.

    Tina



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  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Bob, my comment was based on CBJ's suggestion:
    "
    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."
    My point is that if you include that "CFS will not be used for any of these illnesses," you need to give scientific reason for it. Your positive comment on this suggestion made me think this was going forward. Now you are telling me some people want CFS to remain? I am shocked. If the CFS name remains with a different diagnostic code, then all the CFS research, much of which establishes the biological abnormalities, goes with it. To have a biological illness with such an awful name .... I'm sorry .... I just don't see it. Very little research has been done on ME using one of the ME criteria. It's been done with CFS or ME/CFS. I know we need more narrow cohorts. But to reject all the CFS research as saying it is not ME, well, that would be a disservice to the ME patients. I know there is bad research that gets lots of attention. But there is a lot more good research under CFS, such as that done by Peterson, Klimas, the Lights, Natelson, Komaroff, etc.
    For my disease, I want a better definition and a better name. But I don't want to end up with a label of a disease in which very little is known because very little research has been done. Give me the good findings in the CFS research, you can keep the name and the criteria. The criteria should change now according to the research. And then so should the name.
    Ok, I'm done.
    Tina
  15. Bob

    Bob

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    OK, I've just had a look through our list, and I have to admit that I think it is a little unsatisfactory, in various ways. o_O

    I'm afraid that I don't think I can spend much more time and energy on it, as I don't think that we are easily going to come up with something that many people are happy with, in an open process like this. So I think our energies would probably be better used in other advocacy projects. Or at least, I don't think I can take it much further forwards myself.

    After reading the list, I can see that the process has been dominated by just one or two dominant voices, and me as well, I suppose.
    And that wasn't really how I envisaged the project moving forwards.
    That's not a criticism of anyone, but I tend to think that this has probably driven some people away from the process.

    But it was worth giving it a go, to see what we came up with. It was never going to be a perfect project.

    I think this process is too complex, confusing and exhausting, on an open forum, to come up with anything much better, or to continue trying to tease out better details. But I think it was definitely worth giving it a go.

    Even though the list is a bit of a mess, I propose that we now have a vote on what we want to keep, and what we don't want to keep, to see if we can come up with anything at all that is a consensus. I think we need to do this next, to see where we are up to. And then we can continue to work on the items we have remaining, if any.

    But before we vote, can I please have some feedback, because I don't want to dictate what we do.
    And I don't actually know if people are still on board. I tend to think that most people have drifted away. I think people are keeping silent instead of voicing any concerns about what we've come up with.

    If it seems like I am cutting short the project too quickly, then please say so, but keep in mind how complex it is to oversee and organise. If we have a vote, then we can see where we are up to after that. For example, we might only end up with one or two items that we can all agree on.

    If anyone thinks I'm on completely the wrong track here, then please say so. I'd be very happy to stop now. I think it's been a rewarding and helpful project, even if we stop it now.
  16. Bob

    Bob

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    Thank you Tina. I did put that proposal in, but then I deleted it after a specific objection.
    It was only one objection, so it is open to discussion.
    I'm afraid that I'm too tired to coordinate any discussion re details at the moment.

    Personally, I agree with you about the name, but this is such a contentious issue, that I don't see any point in focusing on it in this project. But that's just my opinion. Everyone should feel free to discuss it.

    Remember that on a forum like this there are as many opinions as there are members (5000?)

    Good points. Thanks for the feedback Tina.

    As I've just posted, I suggest we move to a voting period now, to see where we are up to.
  17. Ember

    Ember Senior Member

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    I had thought that there was a commitment to allow more discussion first:
    My emphasis added, Bob. (Sorry if my post is lacking in tone. I'm tired.)
  18. Bob

    Bob

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    My proposal to have a vote is part of the process, to see where we are up to, and not the final outcome.
    We can pause, or discuss further, but as is probably evident from my recent posts, my commitment to this project is dwindling, because I don't think it's possible or desirable to take it much further in this format. I gave it a good go, but I don't think it's going to be workable. And I think some sort of vote could tell us exactly where we are up to.
    But if anyone else wants to take this forwards, then I'll step out of the way.
    I'm also worried that I'm sort of dominating this thread, with only about five to seven people having given me feedback that this project was a good idea, and even they seem to have fallen silent.
    The thing is Ember, is that this is such a complex project to keep on top of, that I just don't think we can get the outcome we all want.
    We can have further discussion or voting, or just leave it as it is now.
    As there is so little involvement now, I suspect the project might have come to a natural end.
    I didn't want to be involved in this as a long-term project either, so if anyone wants to take anything from it and work with it, going forwards, then maybe it's been a useful exercise.
    A longer term project with a small number of people working a in private group would probably achieve a better outcome, in my opinion.
    I would consider this fast and furious process to have been illustrative of the variety of opinions on the forum, rather than a definitive guide to a consensus on the forum (which it definitely isn't at this stage!)
    And maybe that's all we could achieve in such a process.
    I think a small private working group would achieve far more.
    But these are just my own opinions.

    Edit: Although very interesting as a short exercise, it's not been a particularly enjoyable process from my point of view, because of the complexity of trying to accommodate so many opposing views, and the limitations that an open process like this brings in terms of the method of working, and I can't see that changing. But I think it's been a good experiment.
  19. Ember

    Ember Senior Member

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    You have every right to your dwindling commitment, Bob. Yours has been a valiant effort. I had asked for an opportunity to contribute to the case-definition discussion, and I was working on a post. Some have directed comments my way, and I haven't had a chance to respond. I was still working on the implications of my own suggestion. So I do experience your suggestion that we move to a vote as abrupt, especially in view of earlier understandings that we could slow down.

    I valued your process for the opportunity it gave us to share different views on a number of central issues. If we move now to small private working groups, what happens to the continuity of the discussion that started on this thread?
  20. Bob

    Bob

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    Hi Ember, everything I have said in this thread should only be considered in the form of 'suggestions', nudging the process along. I do not want to dictate anything to anyone on this thread, and have been very wary all along that my voice may have been too dominant in this thread. But it has not been an easy balance to get right between being passive, and taking too much control of the conversation. And I've only taken a lead in this process for as long as I thought there were no objections, and that people were on board. So it's good to get your positive feedback.

    There is so little activity on this thread now, that I don't know if anyone is still involved. It seems to have fallen fairly silent. But maybe I am being impatient. I will wait.

    I will certainly wait for your input and add it to the list, and wait for it to be discussed.

    In terms of where we go from here... Again, it was only my suggestion...
    It's got to be a decision for everyone involved in this thread.
    If a number of people wish to carry on this process over a longer period of time, then I'm sure we can do it. It's just a case of working out how. After a pause, and any feedback, I might even be inclined to continue, if it seems to be a productive process.

    So if the discussion continues, I'll be receptive.

    But anyone at any time can continue this discussion or process... I don't consider myself to have ownership of this project... It had been suggested we do something like this, and I just spontaneously took a lead, after it seemed like no one else was going to collate our suggestions... But the original suggestion was to form a working group, so I don't see any reason why the project can't evolve in other directions if necessary.

    I'm pleased to hear that you've valued this process Ember. I had the feeling that people were more irritated by it than valuing it! :confused:

    Bob
    Ember likes this.

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