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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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    How about this as an initial attempt at reworking item no. 2? (comments and feedback please):

    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.
  2. Ember

    Ember Senior Member

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    Are we talking about the same suggestion? I find no discussion following post 283, only your rejection of it in post 295. Hence (in part), my concern with finding a way to slow down.
  3. Ember

    Ember Senior Member

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    I would like to participate in this discussion, and I started to compose a response to the definition issue last night, but I can no longer continue. I hope there will be an opportunity to enter this discussion later.
  4. Bob

    Bob

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    I haven't crossed anything out without at least two objections, including my own. I think that most deletions have had three objections. Also, I considered my own views (including my views on the possibility of consensus), which I've made clear throughout the thread.

    We have to limit our discussions to a certain extent, or we will never finish, that's why I took the 'consensus' or 'veto' approach. But anyone can continue any discussion at any time, and try to reach a consensus.

    If it's important to you, then I'll look for the discussion points (let me know?), but it's not going to be easy to find them, in amongst so many posts.

    I'd rather you just quoted your suggestion again, and allow people to comment on it again.
    That would probably be more satisfactory for you anyway.


    I've edited this post - Text changed and added to.
  5. Bob

    Bob

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    Well, I'm just trying to help coordinate a project that I'm not even sure if many people want to be involved with.
    But in terms of this project that we're now attempting to do on this thread, then, yes, of course you can contribute at any time.
    But I don't have a monopoly on this thread, or on any 'rules'.
    I've just suggested a process that I think has a chance of working.
    So I'm happy to step back from doing this, if people want me to, or to change the way I'm doing things if anyone has a better idea.
    And be assured, Ember, I've heard what you said about slowing down, having full discussions, and being open minded.
    But you weren't excluded from the process anyway. That was just your perception.
    Like I said, you can reopen or continue any discussion at any time. (That's not even a decision for me to make - you must decide that sort of thing.)


    I've edited this post - Text changed and added to.
  6. Bob

    Bob

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    Ember, I've edited both previous posts, to add a bit more explanation, and to add clarity.
  7. Bob

    Bob

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    Ember, this will hopefully show you that I'm being fair and inclusive, and allowing discussion to take place, and that I'm taking a range of opinions into account.
    I've also considered my own opinions, in relation to this, so that there have been at least three 'objections' to item no. 4.
    These are just the objections that I'm aware of, and can remember, so there might be more:

    Again, the discussion has not been closed by anyone. You can, of course, raise any issues that you want to, at any time.

    .
  8. Bob

    Bob

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    Ember, Item 4i, is still on the list, and has not been crossed off. So which item have you been referring to when raising your concerns? I assumed it was item 4i, but I've just noticed that it's still on there.
  9. Bob

    Bob

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    This is now an OLD list - please see new list posted here:
    http://forums.phoenixrising.me/inde...r-what-should-we-do.17972/page-18#post-276890

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

    1a. An independent panel of Diagnostic experts will be created to write a (100% complete differential diagnosis list of all other diseases) [or] (a comprehensive differential diagnosis list of other diseases and conditions) that can cause the symptoms of ME and CFS, they will write a step by step easy to follow guide on how to rule out all the other diseases and all the tests that are needed to do this.
    Clinicians and researchers who have already created differential diagnoses lists, or have a track record in finding the misdiagnosed patients in the CFS group, will be consulted or included in the panel. Such as Dr Byron Hyde, Dr Shirwan A Mirza, the writers of the ICC and the writers of the IACFS/ME etc.


    Alternatives 1a:

    1ai. An independent panel of Diagnostic experts will be created to write a (100% complete differential diagnosis list of all other diseases) [or] (a comprehensive differential diagnosis list of 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.
    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 have a track record in finding the misdiagnosed patients in the CFS group, will be consulted or included in the panel.
    (*References = Hyde, Mirza, ICC, IACFS/ME toolkit, and any others?)
    This guide will be placed prominently on the CDC web site replacing its existing testing requirements.

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

    Alternatives 1b:

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

    1bii. It will then become advisory 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.[/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.

    Alternatives 2a:

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

    A review of the medical literature must be done, to compile a list of all physical anomalies that have been found in CFS and ME patients, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH 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.


    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.

    Alternative 2bii:

    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 _____________________.


    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.

    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).

    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).[/QUOTE]

    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 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.
  10. rlc

    rlc Senior Member

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    Hi Bob, you say that you’re not too sure if other people are still reading, maybe not, but Medfeb and Tina, are still reading, and seem to be in agreement with large amounts of what is being said and they represent the US orgs that will be communicating with the CFSAC so I feel that it is worth continuing.
    RE
    QUOTE]"Yes, it's very vague, and I think we will have trouble trying to define what we mean here."[/QUOTE]

    There is nothing vague about it and every medical and scientific person knows what it means

    Independently means that it is not done by the same group so they can’t fake the results and mistakes are picked up.

    Replication is explained here http://www.ucmp.berkeley.edu/diapsids/buzz/dinoscience.html

    As
    RE the wording of 1b

    It should be along the lines you suggest “be 'compulsory' for all patients to be offered testing.”

    Obviously patients can refuse any testing they want, Advisory doesn’t imply a strong meaning I.E medical text books advise that patients with chronic fatigue be tested for celiac, the CDC has chosen to ignore this advice.

    I think we could add that the CDC needs to add the guide to its web site.

    So I think that 1b should read

    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. This guide will be placed prominently on the CDC web site replacing its existing testing requirements.

    I’m not 100% on the ins and outs of the US health system, but should we be including that it is compulsory that insurance companies pay for the tests??

    So should it read something like.

    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. This guide will be placed prominently on the CDC web site replacing its existing testing requirements. And that it will be compulsory for the testing in the guide to be paid for by the patients insurance.

    Regarding 1.a

    I do see we have a long history of different factions being either for or against the views of the likes of Dr Byron Hyde, My view is simply that he has 25 years of experience in finding the misdiagnosed amongst the CFS group, so this is valuable knowledge that should be used. But I have no objections to the likes of the writers of the ICC being included the more the merrier! I do however strongly object to the hfme list being included simple because this is a list on a un medically qualified persons website. Recommending it will make us look unprofessional.

    So I think 1a. Should read

    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. Clinicians and researchers who have already created differential diagnoses lists, or have a track record in finding the misdiagnosed patients in the CFS group, will be consulted or included in the panel. Such as Dr Byron Hyde, Dr Shirwan A Mirza, the writers of the ICC and the writers of the IACFS/ME etc.

    RE the wording of 2a your changes

    the word (a) stops it from being a replicated study it should be (the) representative (selections) but I have objections to this sentence. By saying all cohorts, it is pre judging what the results of removing all the misdiagnosed will be, this is not science, and causes confusion as to what these cohorts are supposed to be, before the science has been done to see if there are different cohort. We have no proof that someone with say no POTS and someone with POTS do not have the same disease! So therefore are not a different cohort.

    We shouldn’t forget that we don’t know what ME is it could be five similar diseases!!! So what I’m saying is that scientific protocol should be followed and there should be no pre judgments as to whether there are different cohorts. The scientists simply study groups of patients that have had all the misdiagnosed remove. The result of this study will then provide the scientific evidence as to whether there are different cohorts or different diseases (this is one of the points of doing the study). Saying all cohorts is jumping the gun, the science hasn’t been done properly yet. So we start with only one cohort based on not having any of the other known diseases that cause these symptoms, They are then studied for everything, from the replicated scientific evidence that is produced, The scientists can then see if there are different cohorts and or different diseases.

    We need to remember that we are lay people not scientists, we do not want a repeat of what happened with XMRV where some patients were telling the scientists they didn’t know what they were doing and they should be doing it the way the patient wanted, this really pissed off the scientists!

    It fine to say we want all patients correctly tested and all patients with other known diseases excluded, because this is correct scientific process. It is fine to say that a review of the scientific literature is done to find what should be tested for because this is correct scientific process, and it is fine to ask for it to be a independently replicated study because it is correct scientific process. If we start asking for more than that we will be going too far and will lose respect.

    Because we are asking for a replicated study involving different groups of scientists and doctors, these scientists and doctors will stop the CDC from stuffing up the results!

    So my view is that 2a is scientifically not pre judging the situation as I have written it and should remain as I wrote it.

    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.

    RE objections to

    How about (if required) is added so it reads

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

    We don’t know that ME is not made up of several similar illnesses so we can’t say we want it to be called ME, until the science has been done. I think people in the US also need to be very aware that for people especially in the UK, ME officially means Psychiatric illness!!! Even if the Officials change it to being a Physical illness it will still take the public years to catch up with this, and they will still be taking the piss out of people who say they have ME, personally I would love a completely new name with no psyc connotations to it. But the science has to be done first!! Before any names can be agreed on.

    RE 3b

    Happy with alternative 3b however I think it should read

    CDC (will) advise to doctors and insurance companies

    So will, not should, its far stronger!

    RE 7 just write CBT and GET are to be removed from the CDC CFS website, people were telling me to be reasonable and we had to do this in a stepwise manner which is why a proposed the compromise of psychological treatments. People now don’t seem to want me to compromise, so I will go back to being unreasonable, tell the CDC to get its Psyc crap of the cite Ha Ha, but be very specific as to what you want removed as I mentioned should be done with 8

    This should not include the CCC because the writers of the CCC have updated it with the ICC, they would not support the CCC being used because they have updated it with the ICC, we should not be proposing something that the writers of the CCC and ICC would not support!

    I think it should read

    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, as the case definitions 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).

    All the best
  11. rlc

    rlc Senior Member

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    Hi jspotilla RE

    Independently replicated science means, the same experiments, replicated in exactly the same way by different groups of scientists in different locations.

    This is the gold standard for providing scientific proof; any research that is not replicated is not considered verifiable scientific proof!!

    This is what was done because of the confusion about XMRV; a replicated study was done in multiple labs, which solved the problem.

    So yes what I’ am proposing is that we need verifiable scientific proof for the first time ever in this field so that all important questions will be resolved in one go, instead of spreading it out over years or decades.

    So this will involve several groups of a reasonably large number of patients say 100, being tested in at least 3 separate locations by 3 separate groups of scientists.

    It is the correct scientific process that should have been done years ago, then we will finally have verifiable scientific proof, none replicated studies are not accepted as verifiable scientific proof!

    The results will be published.

    RE
    "

    A differential diagnosis list is the medical term for a list of diseases that could all cause the same symptoms, so I mean all other diseases that can cause the symptoms of ME, which will probably come to between 50-100

    Tests that are needed to rule out the diseases on a differential diagnosis list are done starting with the diseases that are most common and works progressively down to the very rare.

    So the vast majority will have the more common diseases and will be diagnosed with very little testing it is only the people with very rare diseases that may require large amounts of tests, but if a differential diagnosis list is written in a well planed manner it can be possible for these rare diseases to be picked up without many more tests, e.g. The guide says people who have hyperpigmentation are to be tested for Addison’s, Hemochromatosis etc, then these patients will just get these tests.

    So if the guide is written correctly it is nowhere near as daunting and large a task as it may appear.

    RE
    "
    We already have differential diagnosis lists that people don’t like because they are incomplete, by getting an independent panel so the CDC can’t muck things up and including other doctors with a good history of finding the misdiagnosed amongst the CFS group, we have a very high chance of getting a very good differential diagnosis list written, if we don’t like it we will complain loudly!

    RE
    Somebody can have ME and any other disease under the sun, which is why it is important to test people properly, so that any other diseases are found and treated.

    But for the research study only people who just have CFS or ME will be accepted because any other diseases that the patients have will affect the results and confuse the scientists.

    Yes a review of the scientific literature will be done, which will collate all the physical anomalies that have been reported in ME patients. (obviously it is scientistist that will be doing this, so if anything rediculous is found in the scientific litrature it won't be included.)

    These physical anomallies will all be tested for in the replication study!

    We don’t want research studies testing for one thing at a time, and then another one set up to test for something else this will take a hundred years before we get the answers we need.

    If one replicated study tests for everything at once we will have all the answers in a year.

    This replication study will be done at centers that have all the equipment e.g. hospitals and medical universities. Which will mean again it is not as daunting as it seems, patients will have to provide a number of blood sample and maybe urine sample, spend a few hours getting cardiac testing, some time getting MRIs etc, etc if it is well organized, a group of patients could be tested for everything in under a month.

    Yes there will be some expense involved, but would you rather the CDC spends six million dollars a year doing nothing of any use to anyone, or that this money which would easily cover all the costs of this be spent on doing the replicated study that will find the answers to all the problems once and for all?

    If patients don’t want to volunteer for what will involve some mildly unpleasant testing then they don’t have to, but i don’t think a lack of volunteers is going to be a problem.

    RE
    The CDCs study will not be a replicated study so it’s results will not be verifiable scientific proof. They have a long history of not ruling out all the diseases that can cause CFS symptoms which will guarantee mixed cohorts and useless results. Because they will not be testing the patients for all physical anomalies we will be left with still having to do vast amounts of research. So the CDCs plan will based on past history and the few comments we have had about it a waste of time! Plan 2a will solve all the problems in the shortest possible time!

    All the best
  12. rlc

    rlc Senior Member

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    Hi all, I do very much appreciate that everyone is sick and some people are able to read and understand the information at different speeds and levels than others.

    As far as I know we are not on a tight deadline? Tina, Medfeb please advice! So there is no hurry.

    I’m noticing people are making suggestions based on not having read the previous conversations, where points have been discussed in detail and information that explains the validity of the suggestions has been outlined, these is leading to poor bob constantly changing the list, and we will never get it finished.

    Like I say we are not as far as I’m aware on a dead line, so if people could start by reading what has been previously discussed before making suggestions, so they know exactly the reason why the suggestions have been made, every bodies input is valid and wanted, so just take as long as you need to catch up with the conversation we don’t want anybody making themselves sicker by over exerting themselves.

    Thank you everyone

    Thank you bob for your efforts!!! if you could if every time the tread moves onto a new page could you copy and paste the most up to date version of the suggestions on to the new page, I don’t know about everyone else, but I getting lost at times as to where we are up to, and I’m having to look back through the pages to find the latest recommendations Thanks

    All the best
  13. CJB

    CJB Senior Member

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    Oregon
    Good catch. I know I'll never get to these last three posts.:(

    Good luck y'all.
    :ill:
  14. Ember

    Ember Senior Member

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    Thank you, Bob for the effort you've taken in posting the earlier discussion. This was the wording that was of concern for me:

    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.

    As I said in a previous post, “If Mary agreed to having her wording struck down, then I missed that post.” CJB was commenting on my wording:

    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.

    But I see now that Mary did consent to your deletion, so I apologize for my confusion. The numbering of the items changed overnight, and I mistook the reference in her post (having started to read this thread selectively).

    Please don't think that I speak in anger when I say. “I can no longer continue.” I've crashed.

    You asked for feedback on the process. The effort to keep up with the pace is doing me harm. If I were in the world of the well, I'd assume I was the only one struggling. I'd probably slip away, having adjusted to being disabled. But here, I thought that I might be speaking for others as well.
  15. Bob

    Bob

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    Thanks for feedback.


    Yes, I understood what you meant, but the wording didn't specify what sort of science (psychiatric?), and if it should be published research.
    So I've reworded it, in an alternative suggestion to be more specific about only including published biomedical research.
    See version 2aii.







    Nice thought about the insurance companies, but wouldn't that involve law making? So it would be outside the CDC's remit, and only something congress can do.

    With regards to 'compulsory'...
    Can the CDC compel doctors to give certain tests?






    I assumed Hyde has published something that we can reference?

    I still think we should avoid individual names, for the reasons I gave, but reference their work instead.
    This would have the same effect, but avoid name-dropping.

    I've added your new text, to the list, and left mine there as well, for us to discuss the matter further.
    I'm open to including the names, but I think it's got to be done carefully, or in a slightly different way.

    Adding the writers of the IACFS/ME is an excellent thought.








    That's an old version. I'd rewritten it.
    See 2aii.




    I understand, but your wording just said that all patients should be tested, and that isn't a possibility in terms of 2a.
    The CDC aren't going to go out and test 2m patients.
    So I've rewritten it. See what you think of 2aii.











    I think leave it as it is or take 2b out altogether. I think that adding "If required" confuses things. We haven't specified the name, so that leaves it flexible.





    Done.




    :) :thumbsup:

    Point noted about my version 7ii. I'll leave it there for a while for others to comment on and discuss. But I'm happy to go with version 7.




    I've added your 4i, for others to comment.
  16. Bob

    Bob

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    I appreciate your thoughtfulness here rlc...
    But I think it's going to be a slightly messy process however we do it, and that people can't be expected to read everything, and so should feel free to contribute what and when they can. If they can read everything then that's helpful, but I think there's too much pressure on people if we expect so much of people. So let's just carry on the best we can.





    I will try rlc to post the list on each new page... We need the forum wiki for this work really!

    I think we're all at sea here rlc! You're not the only one getting lost!!!
  17. Bob

    Bob

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    I forgot to say that i've placed: "This guide will be placed prominently on the CDC web site replacing its existing testing requirements." under 1a, not 1b. I think it's the right place for it.

    I haven't yet put in: "And that it will be compulsory for the testing in the guide to be paid for by the patients insurance", until i get feedback on the issue of law making re insurance.
  18. Bob

    Bob

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    So does that mean you understand what I've done and why I've done it now?




    Take care of yourself Ember. Sorry you've had to push yourself so hard to keep up.
    Please don't worry if you can't engage for a few days...
    We won't finish anything without you.
    I should think that the process will slow down a little now, because we've got past the brainstorming bit, and we are now refining and narrowing down.
    And there's no hurry to finish this, so we can slow down.



    Yes, you make a very important point, but I can't see how it is possible for me to slow it down really.
    I've got to fully respond to everyone immediately, or I will lose track of everything.
    And I want lots of feedback, or the process won't work if people aren't engaged.
    So I'm at a loss about what to do about that.
    Except to say to people that we can slow down.
  19. Ember

    Ember Senior Member

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    Yes.
    Bob likes this.
  20. Bob

    Bob

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    Time for a break, and bed. Rest well everyone.

    I'm finding this process very interesting, and have enjoyed discussing all the issues with everyone. I'm interested in everyone's opinions, and I respect the differences in our perspectives.

    I know it's been a slightly bumpy ride, but we are all friends & colleagues here, and on the same side, and we all want the same ultimate outcome.

    I don't know how useful or valuable this project will be, but it's worth giving it a go for a while, and seeing if we can come up with anything. If we do come up with some final proposals that we all agree on, I think it will be quite an achievement on an open forum like this.
    ukxmrv likes this.

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