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What Should Phoenix Rising Tell the IOM Committee?

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Mark, Jan 8, 2014.

  1. adin

    adin Administrator

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    I can help put things together but I *definitely* need help from others to brainstorm & get together source material. I really want as much of what we (I?) present to be from the members as possible.

    I apologize as I'm pretty brain dead due to our newborn (3 wks old today!) since my wife and I are both PWCs.
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  2. Bob

    Bob

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    Hi Mark,

    I agree with many of the comments that have been made so far. (I haven't read all comments yet.)

    Perhaps not everyone will agree, but I agree with others who have said that the committee, itself, is the wrong place to focus purely on objections about the process. Once we arrive at the point of presenting evidence to the committee, our attempts to stop the process have failed. The committee's remit is to carry out the work of defining diagnostic criteria, and they will be deaf to our complaints re process, and legally unable to act on such comments. They have a legal contract that they will fulfil unless instructed otherwise by the government departments.

    I agree with Tania that perhaps one minute, out of seven, could be dedicated to stating any objections and concerns about the process. I also agree with Tania's comments re which objections should be raised.

    I also agree with Sparrow, who said that they might stop listening if we start off by bombarding them with a long list of complaints and objections.

    But I do believe that our objections should be stated succinctly for the record.


    I believe that the main focus should be on pressing home (in strong terms) the importance of separating ME from CFS and CF (or separating ME from CFS/CF). And making sure that they know that if ME isn't separated (as either a subgroup or distinct entity) from CFS/CF then many in the patient community will have considered the process to have been an utter waste of time. (Perhaps we could set up a forum poll to support this assertion? e.g. the poll question could be something like: "Will the IOM process have been valuable if, at the end of the process, ME has not been defined as a separate subset or separate entity to unexplained chronic fatigue?" In such a question 'ME' would have to be defined loosely.)

    There are many other issues that could be raised but, IMO, the most crucial issue that they need to understand is the necessity of defining ME as a separate subset or separate entity.

    Like others have said, they also need to understand that ME is not fatigue, and that the primary symptom of ME is not necessarily fatigue (e.g. it can be malaise, post-exertional malaise, post-exertional pain, exhaustion, weakness or autonomic nervous system dysfunction, etc.) I think it would be helpful to highlight this, in strong terms.

    Also, as others have said, the committee needs to be aware that there is abundant CFS (i.e. Fukuda, Oxford etc) research which describes CFS as a functional disorder, and that such research must be ignored/dismissed when defining ME. I'm not sure how to best go about discussing/presenting this, because there is some very good ME-related research done under the 'CFS' name. And there is relatively little research done using CCC/ICC definitions. (There are also the historic Ramsay and London 'ME' definitions that I don't know a great deal about, and I'm not particularly familiar with the research they have produced. But much of it would be considered outdated by now.) Perhaps we (i.e. as a group project for members of the forum) could collate a list of research papers that we believe describes ME and ME symptoms, as opposed to CFS, to submit to the committee?


    I think the name issue isn't so important, and it could be a major distraction, but I think that 'Neuro Endocrine Immune Dysfunction' (NEID) would be a very good name. (But perhaps far too unrealistic in terms of wishful thinking!)
    Otherwise 'ME' (even just as an abbreviation) would be an acceptable name to me.
    Last edited: Jan 10, 2014
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  3. taniaaust1

    taniaaust1 Senior Member

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    thanks for signing the personal one.

    Yeah well that's the thing.. if IOM cant use just experts, they shouldnt be doing it at all!!

    The other contract.. isnt specifically about IOM it is supposed to go further by being broader than that.. I do not want IOM to go ahead but on the other hand I do not want this same thing ever done again, next they may be doing it to MCS (something like that is very likely) or what about even FM. We need to stop non-experts from defining disease. We need to make sure other diseases arent going to have it done to them too.

    its just the simple fact that "non-experts should never redefine or be defining diseases be it IOM or whatever" (thou I didnt mention IOM in the petition other then have it as one of the groups it will go too and IOM is mentioned in the link for more info so this petition is good advocacy for the IOM situation in a way in which others can quickly and easily understand and understand some way we are fighting against it).

    I did this petition as there needs to be such a rule/regulation or whatever in place by the gov or whatever which never allows this kind of thing with definitions to be going on in the first place.

    Nowhere in the world should diseases be being defined in this way.
    ..........

    Note.. there is room with the way the petition has been done for another to do another petition .. one specifically targeting IOM and talking about that situation and why it shouldnt go ahead at all. The one I did would be a good backup to such a petition and of cause can be used too against the current IOM situation.

    If anyone wants to sign it it's at http://www.thepetitionsite.com/799/278/645/stop-non-experts-from-redefining-diseases/
  4. Ecoclimber

    Ecoclimber Senior Member

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    Ok, here's my take on it and is just one of many approaches to take:

    I would offer an itemized or bulleted list that is quick, relevant and to the point. I would address the elephant in the room right out of the gate concerning psychogenic disorders and cohort mixing. I would put the psychosomatic model and their supporters on the defensive.

    Since the question “What is the most important aspect or information that this committee should consider throughout the course of the study?” , one must stay relevant in reply.

    I would affrim the legitimacy of ME by listing each symptom of ME ( time permitting) and back it up with relevant research

    1. PR goes on record as supporting the ME/CFS researchers and Patient Advocate letters opposing the IOM contract. (Althought not relevant to the question but needs to be stated )

    2. Science and technology is still in its infancy in developing and finding biomarkers for complex diseases and illnesses and therefore we oppose the flawed hypothesis that without them based on EBC or EBM, psychogenic disorders are to be assumed. http://www.sciencemag.org/content/342/6164/1367 (note: not to be included info only)eg: Multiple sclerosis, for example, was once called hysterical paralysis, and doctors treated patients like hypochondriacs and assumed they couldn’t cope with life. Then, with the advent of new technology (in this case MRI), scientists and clinicians were able to see brain lesions in MS patients and skepticism vanished.

    “Since the genetic code was deciphered in the 1960s, scientists have assumed that it was used exclusively to write information about proteins. UW scientists were stunned to discover that genomes use the genetic code to write two separate languages. One describes how proteins are made, and the other instructs the cell on how genes are controlled. One language is written on top of the other, which is why the second language remained hidden for so long.

    The newfound genetic code within deoxyribonucleic acid, the hereditary material that exists in nearly every cell of the body, was written right on top of the DNA code scientists had already cracked.

    Rather than concerning itself with proteins, this one instructs the cells on how genes are controlled.

    Its discovery means DNA changes, or mutations that come with age or in response to viruses, may be doing more than what scientists previously thought, say the researchers. “

    http://www.washington.edu/news/2013/12/12/scientists-discover-double-meaning-in-genetic-code/

    3. We oppose any research based on mixed cohorts consisting of the Oxford, Holmes, Fukuda that involved patientes with depressive disorders as it does not segregate patients with ME as defined under CCC and is therefore flawed.

    4. This is about ME and using the diagnostic criteria developed by ME/CFS researchers based on their experience and research. that incorporates the following:.....

    5. It’s not about fatigue which is common to all illnesses but about inability of the body to produce energy, a specific kind of energy that is measured in two day CPET. http://ptjournal.apta.org/content/early/2013/06/26/ptj.20110368.abstract and http://www.ncbi.nlm.nih.gov/pubmed/21615807

    6. ME/CFS have abnormal Spinal Fluid Abnormalities in Patients with Chronic Fatigue Syndrome http://cvi.asm.org/content/12/1/52.full

    7. You can take the position that the IOM is going to produce a psychogenic disorder of CMI definition treatable with CBT/GET. Since NICE is going to be considered by the IOM Panel, use the information from these distinguish scientists, researchers and clinicians on statements made to the High Court Judicial Review concerning flawed research behind NICE as to why ME/CFS is not a psychosomatic disorder located here:
    http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm

    8. Pain could be caused by Peripheral Nerve Pathologies http://www.painresearchforum.org/news/33529-multiple-studies-one-conclusion-some-fibromyalgia-patients-show-peripheral-nerve

    9. etc.
    Last edited: Jan 9, 2014
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  5. lnester7

    lnester7 Seven

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    1. Just state that we oppose to IOM contract for record, The cancellation should be a separate effort and this is not the place in my opinion.
    2. ME should be a separate entity, we do not have only fatigue but inability to produce energy on demand IS NOT THE SAME as fatigue, OI, Brain fog, cannot enter stage 4 sleep, develop other comorbities.... Once we are separate we can fight for a better name than ME.
    3. Link every point to the biomedical report. so if you say brain fog (1) make sure to (1) reference the study. This way they cannot say it was just words/complaints, Everything we say has to be supported and referenced by biological studies.
    4. I love that statical chart on symptoms frequency presented on FDA meeting maybe including something like that.
    5. We will not accept nothing better than CCC and up.
    Look organized, Focused and a Force to be recon with.
    taniaaust1 likes this.
  6. Roseblossom

    Roseblossom

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    Don't waste precious time on the negative. This is a done deal. The IOM (Institute of Medicine) Committee has been given authority by the highest Health & Human Services body in our nation.

    The authority of this IOM Committee can get ME/CFS recognized by our nation’s medical community, at last.

    You only have 5 to 7 minutes to tell them what is most important to accomplish.

    Here're some things I think are most important:

    1. Produce an accurate scientifically valid definition and diagnostic criteria for clinical use.

    Urge them to use the 2011 Myalgic Encephalomyelitis: International Consensus Criteria:
    http://www.research1st.com/wp-content/uploads/2011/07/Carruthers-JIM-Table-1.pdf

    and the 2010 The Development of a Revised Canadian Myalgic Encephalomyelitis Chronic Fatigue Syndrome Case Definition: http://niceguidelines.files.wordpre...-chronic-fatigue-syndrome-case-definition.pdf

    2. Devise and then implement a plan to make certain that this accurate scientifically valid definition and diagnostic criteria gets into the hands of every medical professional. Require that this be taught in every medical school.

    3. Change the name to one that's scientific and succinct - do not use the words "chronic fatigue" or any combination of terms that requires a slash in the middle.

    4. Urge that any study for the effectiveness & recommendation of treatments be conducted under the most rigorous conditions, with a disinterested party supervision.

    Thank you, and my best wishes for a strong & effective presentation!

    p.s. For everyone - you can go here to look at the roster of members on the IOM Committee : http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49592

    ~~~
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    Last edited: Jan 9, 2014
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  7. SOC

    SOC Moderator and Senior Member

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    I'm not sure if this is the best use of our time, but it could be very powerful, so who knows. I tend not to give as much credit to the value of emotional reactions in these cases as I should. :) If we were to do this sort of thing, it might be helpful to also include with each patient something like:
    Joe Shmoe -- former lawyer
    John Smith -- former teacher
    Mary Anderson -- former engineer
    in order to highlight the loss of valuable (tax-paying) members of the workforce.
  8. Bob

    Bob

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    I'm not keen on the idea of an emotional presentation myself, as I can't imagine it achieving any thing, unless it's an extraordinary powerful presentation. But this will be just one submission among many so I do accept that there is room for variety.

    (As an aside, speaking of emotional presentations, perhaps it might be a good idea to submit a film like Voices from the Shadows, for the committee members to watch, if that's possible, as it seems to have quite an effect on its audience. Perhaps it's worth asking the film producers to send a copy to each of the committee members.)
    Last edited: Jan 10, 2014
  9. beaker

    beaker CFS/ME 1986

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    Couple points I haven't seen anyone bring up yet :

    1. Pediatric ME/CFS has different criteria. There have been several papers written on the differences between adult and children. I believe it needs to be noted. IACFS Pediatric Case Definition Paper

    2. There are stages of ME/CFS. How one presents as an acute patient changes as years go by.
    I did a quick search and saw references in articles, but no papers . { and none of the articles particularly good}
    eg. my flu symptoms were present the first 5 or so years. They gradually faded and are not the same.
    My throat was on fire for many years. now it is just a little raspy. My nodes rarely get swollen. Before it was constant. I know I have heard many of the "specialists" speak about different phases and changing nature from acute stage to chronic. Symptoms that would dx me back then, would not be as prominent as now.
    I still meet criteria ( name one I meet it ; ) ) but it may change in some folks so that they don't have the full list they used to. There needs to be some acknowledgement that the course of the disease changes over time and a dx made needs to take into account if the patient is in acute or chronic stage ( since dx is clinical and by symptoms) .
    Maybe that is too complicated for the purposes of this committee, as it would take a keen understanding of the disease. {But then again wouldn't setting a disease criteria take a keen understanding }
    Maybe someone else would like to take a stab at this concept or knows of a decent paper.

    ______
    I do think that we need to state our objections.
    I do think they will glaze over and not hear a thing if we start out that way . But it needs to be there somewhere and strongly put for the record.


    In my wildest dreams PR lists our objections and then a large crowd of patients in jammies appears w/ blanket and pillows and lays down inside venue and outside venue and has a sit- in type protest. Let them carry us out to jail in our jammies.
    But w/ our luck even that wouldn't make the news. *sigh*
    Oh well. Like I said, it was a wild dream.
    So on to a more pragmatic approach.

    P
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  10. Firestormm

    Firestormm Guest

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    Thanks @Roseblossom for reminding me - I did mention this on my previous link to a previous thread. The HHS/IOM do refer to Lenny Jason's revised 2010 Canadian Criteria and perhaps therefore we might take some time to be familiar with its' content and refer to its' component parts in the presentation i.e. the actual symptoms and why we might support their use over Fukuda:

    http://www.mecfs-vic.org.au/sites/www.mecfs-vic.org.au/files/Article-2010Jason-Development.pdf

    I can't recall at the present time, if the experts in their letters endorsed the original CCC - I think they did - so it might again be worth taking some time to ensure that we align behind the version that we think is most suited to a clinical definition.

    I think this is the original CCC from 2005 but perhaps someone might post a better version if there is one somewhere:

    http://www.cfids-cab.org/MESA/me_overview.pdf
    Last edited: Jan 10, 2014
  11. Roseblossom

    Roseblossom

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    ~
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    hi Firestormm - yes, the CCC endorsement letter refers to the original 2003 version: https://dl.dropboxusercontent.com/u/89158245/Case Definition Letter final 10-25-13.pdf

    According to the IOM website, both the original and the revised versions will be considered by the IOM Committee:

    "... efforts that have already been completed on this topic area will be considered,
    including the 2003 ME/CFS Canadian Consensus Definition,
    the 2007 NICE Clinical Guidelines for CFS/ME,
    the 2010 Revised Canadian ME/CFS definition,
    the 2011 ME International Consensus Criteria,
    and data from the ongoing CDC Multi-site Clinical study of CFS.
    In an effort to minimize overlap and maximize synergy, the committee will seek input from the NIH Evidence-based Methodology Workshop for ME/CFS."

    (I'm VERY dismayed to see the NICE guidelines included in this list, *sigh* a perfect example of #4 on my list.)
    http://iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome.aspx

    The U.S. Department of Health & Human Services site indicates that the IOM Committee wants to look more recent information along with the original CCC:

    "... Additionally, the 2003 Canadian Consensus Criteria (CCC) do not account for scientific evidence developed since 2003.
    In order to ensure that the IOM considers all relevant information, HHS has requested specifically that the IOM consider the 2003 CCC in its review and deliberation, in addition to other clinical criteria for ME/CFS and recent scientific evidence."
    http://www.hhs.gov/advcomcfs/notices/faqs-iom.html

    Personally I like the 2011 Myalgic Encephalomyelitis: International Consensus Criteria (and I'd feel better about all this if Dr. Carruthers was on the IOM Committee but I suspect they'd consider that "a conflict of interest".)
    http://www.research1st.com/wp-content/uploads/2011/07/Carruthers-JIM-Table-1.pdf

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  12. alex3619

    alex3619 Senior Member

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    IOM question: “What is the most important aspect or information that this committee should consider throughout the course of the study?”

    This can be answered two ways, the most important things they should look at, and the most important things to ignore, or to read very critically at least. At the end of the talk I think the whole HHS/IOM contract should be objected to. What follows is probably best viewed as source material, its too long for spoken presentation.


    The most important thing to note is the abysmal lack of research interest and funding. As Mark states, its premature to be doing this kind of review, it can only wind up distorted and biased if using a strict evidence based approach. This is my exemplar: when was the technology of a test that is probably diagnostic, and certainly shows severe disability, first invented? 2013? 2003? 1993? 1983? 1973? 1963? 1953?

    The answer: 1963! [1] Or was it really 1949? The Bruce Protocol for exercise testing (including gas analysis) of patients with cardiac disease had its beginnings in 1949 but was only a research tool. In 1963 a multi-stage stress test was added, but anaerobic capacity was usually estimated. It wasn't till much later that the anaerobic threshold was measured. In 2007 the researchers at what is now known as the Workwell Foundation actually tested the core defining symptom of ME, and its not chronic fatigue. Its chronic fatiguability, which is associated with a worsening of other symptoms, commonly known as PEM or PENE. Looking for energy production issues, not fatigue, they used CPET or Cardio Pulmonary Exercise Testing, and also known as CPEX. Looking for worse functioning after activity, they used what is now known as the 2 day CPET. They tested one day, then retested the next. The results were so bad the second day that the first time it has been reported that they thought the machinery was broken. Most people, even with heart failure or pulmonary diseases, show only a variation of about 7% the next day on exercise capacity. Those with strictly defined CFS (they do not typically use an ME diagnosis) showed up to a 50% decline in exercise capacity, though typically less than this but still severe. Some patients do badly on the first CPET doing so badly that no second test is required to show disability. Keep in mind that only mild and moderate patients are likely to have been tested, as severe (and very severe) patients could not even attempt the test.Their 2013 paper concludes [2]:

    "Multivariate analysis showed no significant differences between controls and CFS for Test 1. However, for Test 2 the individuals with CFS achieved significantly lower values for oxygen consumption and workload at peak exercise and at the ventilatory/anaerobic threshold. Follow-up classification analysis differentiated between groups with an overall accuracy of 95.1%."

    How did the medical and research communities miss this for 44 years? CPET has now been used on thousands of ME patients, by many doctors and researchers. If we can miss something this big, for so long, how is any evidence based approach going to be valid? Too much has been missed or ignored. Too much is under-investigated. Too many times very promising results have been ignored and remain unreplicated. Any review looking at disease definition has to squarely deal with this problem.

    Part Two in a while. You can guess what it is about and I will probably use my signature. References probably need to be added to this, and cleaned up, for use in a written version. I hope to put it all together in a combined suggestion, with a suggested intro and conclusion, in Part Three. Its unclear what the format will be, and whether written submissions can be longer than the spoken presentation. It took me a long time to write as I cannot find clear reference for when modern CPET began, with measured rather than calculated anaerobic threshold.

    [1]http://www.washington.edu/research/pathbreakers/1963a.html

    [2] Christopher R. Snell, Staci R. Stevens, Todd E. Davenport, and J. Mark Van Ness, Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome, PHYS THER published ahead of print June 27, 2013, doi:10.2522/ptj.20110368
    Last edited: Jan 10, 2014
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  13. Kina

    Kina Moderation Team Lead

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    I am definitely thinking we need to voice our objections. I would feel entirely unrepresented by Phoenix Rising if this were not so. I agree with at the end of the presentation though because there is a risk of panel members tuning out if the think we are just going to have a 5-7 minute diatribe of negative this and that.

    I am also wondering about a sneaky way to extend what we have to say by creating a very informative thread on Phoenix Rising with very detailed information with links to research, movies, etc, etc, -- we could put on our slideshow a very easy way for panel members and others to access this link -- some may not but it's a way of providing more information to compliment any bullet points we are making.
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  14. Roseblossom

    Roseblossom

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    Me too. In this case I think emphasizing the impact on us would not be an effective use of the limited time Phoenix Rising will have for their contribution.

    The members of the IOM Committee are scientists who will be focusing on diagnostic clinical criteria. They will be looking at the science of the illness, not at us.

    It will be so cool if they can get that right, finally.

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  15. alex3619

    alex3619 Senior Member

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    If no protest is raised about the IOM contract, then it will be used as a sign we agree with the process. Its a poor political move. I don't think it likely we can stop the IOM using petitions, letters or similar, the GWI veterans tried that and got nowhere, and they are more powerful than we are, politically. Noting we do not accept the process is however an important step in setting up future grounds for advocacy. This is a war, not a battle, and we have to think ahead.
  16. Ember

    Ember Senior Member

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    Listen to our experts and adopt, for now, the CCC.

    Don't settle for a “noncommital umbrella disease concept” based on a list of symptoms. CFS includes “all fatigues that are severe, chronic and unexplained, but ignores the 'syndromeness' embedded in its etymology by putting symptoms onto lists that ignore their dynamical relations of causal inter-activity.”

    Acknowledge the causal interactivity of our ME criteria. CCC and ICC authors alike recognized that:
    That research is underway:
    http://mbio.asm.org/content/3/5/e00266-12.full.pdf
    http://trialx.com/curetalk/2011/11/...equencing-and-proteomics-to-hunt-cfs-viruses/
    http://www.ncbi.nlm.nih.gov/pubmed/22039471
    http://mariasmetode.no/2013/11/update-haukeland-english/
    http://www.omicsonline.org/immune-a...algic-encephalomyelitis-2155-9929.1000152.pdf

    International experts recommend removing from the broader CFS category those patients diagnosed with the complex multi-system disease, ME, whose cardinal feature, PENE, is operationalized using a 2-day CPET.
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  17. Firestormm

    Firestormm Guest

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    Agenda sent to me by email earlier from IOM along with the following message about the Workshop:

    Just for information. I don't want to take the thread off piste.

    You will note a slot to for the FDA Voice of the Patient which I asked us to mention above - so that at least is good I think.

    Phoenix are on there - thanks Adin - and I see Jennie is too - thanks Jennie and all the others for doing this.

    Good luck to you all.

    Takes a lot of balls I think to do it or I guess you American's would say, a lot of spunk, and I for one appreciate your efforts :thumbsup:
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  18. Bob

    Bob

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    Regarding the two-day CPET test, it probably hasn't got a robust enough research basis for them to consider it as part of a national diagnostic criteria. (I'm just pointing this out so that people are aware of it.)

    However the CPET test is an excellent demonstration of the difference between fatigue and ME, so it could perhaps be very helpful to highlight the results of two day CPET testing for illustrative purposes.

    Also, a big issue for us to grapple with is illustrated by Dr Snell's latest CPET study. The study recruited Fukuda CFS patients who also had PEM. So how do we tell the committee to consider this to be ME research when, technically, it CFS research?

    How do we clarify the difference between shoddy 'functional' CFS research and good quality biomedical (ME-related) CFS research. Or should we even attempt to? Can we come up with a formula that could help the committee distinguish 'functional' chronic fatigue (CFS) research (that is not related to ME) from ME-related CFS research? Or would we be shooting ourselves in the foot by attempting to distinguish 'good' CFS research from 'bad' CFS research? If they don't consider good biomedical (ME-related) CFS research then it will leave them very little pure ME research to consider.

    (These are all questions - I have no answers at this stage.)
    Last edited: Jan 11, 2014
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  19. Bob

    Bob

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  20. Firestormm

    Firestormm Guest

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    I think that is if you turn up in person on the day, Bob. They offer 15 slots for those people on a first come first served basis. At least that is how I read it. It doesn't apply to the pre-arranged presentation i.e. Phoenix's.
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