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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Article: Defining Moments: the Myalgic Encephalomyelitis Definitions Over Time Pt I: From Symptoms T

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 24, 2011.

  1. Ember

    Ember Senior Member

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    Sloppy language won't smooth this transition, and there are ways I could take issue with what you write.

    But like you, I hope the ICC will effectively reduce ME/CFS to a transitional name. Would substituting ME/CFS in the CAA statement bring clarity?

    I too look forward to groups advocating for ME and CFS.
  2. rlc

    rlc Senior Member

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    Hi Ember, I fail to see how you interoperate that as sloppy Language, but everyone is entitled to their opinion.

    A large number of the writers of the CCC,

    Bruce M Carruthers, Marjorie I van De Sande, Kenny L De Meirleir, Nancy G Klimas, Peter Powels, were involved in writing the new ICC definition. They have now said that they were wrong in the CCC and that the term ME/CFS is not to be used anymore!! The patients with ME, diagnosed by having the same symptoms as are found in the ICC are to be diagnosed with ME, the patients who do not have the symptoms found in the ICC are to remain with the diagnosis of CFS!!!

    As it is the principle writers of the CCC that are now saying this, and they were the only recognized medical people who ever gave the term ME/CFS any credibility. The fact that they have now removed their support for term ME/CFS, means that it is totally unsupported by any credible medical source and should no longer be being used. It is only some patients and orgs that are refusing to acknowledge this!

    So therefore Also as a large number of the ICC authors wrote the CCC, and are now saying that, they were wrong and that ME is ME and CFS is CFS is an accurate description of the situation, not sloppy language.

    RE But like you, I hope the ICC will effectively reduce ME/CFS to a transitional name. Would substituting ME/CFS in the CAA statement bring clarity?

    This wouldnt bring clarity because ME/CFS is now an obsolete term, and still implies that there is a connection between the two conditions, which there isnt, they are different. The CAA should just be reporting exactly what the ICC is saying, that ME is a different illness to CFS. They just have to accept that things have changed now, and that their previous stance was wrong.

    The point is the transition has been made, ME and CFS are now seen as different conditions by both the ICC and the CDC, it is just a matter of the US orgs and some patients accepting that this has happened and adjusting to it, I do appreciate that this has come as a bit of a shock to some people, especially in the US. but now it is time to embrace the new situation and start taking action.

    RE I too look forward to groups advocating for ME and CFS
    .
    Me to, I hope that everyone will stick together for the common good of everyone! This should be about compassion for people who are suffering, and finding the most effective and quickest ways to get everyone help. Which is why Im making suggestions for advocacy plans that may help in light of the new situation, the ICC and CDC recognizing that ME and CFS are two different conditions has turned the whole situation on its head and has opened up a lot of new opportunities!

    All the best
  3. Jill McLaughlin

    Jill McLaughlin *****

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    Ember, Cort said that the CAA used sloppy language in their description. I thing it is
    doubtful as they have full time professionals working there. The ICC refutes the
    use of ME/CFS, as ME advocates had been saying all along, while the so called
    advocacy groups were promoting and advertising it.

    Again, if for whatever reason they have "seen the light" and are supporting the
    ICC, I have not seen any indication that this is the case. CAA still has their erroneous
    (sloppy) statement and see nothing but CFIDS or ME/CFS all over the Pandora site.

    Jill

    -------


  4. Ember

    Ember Senior Member

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    I thought this was the CAA statement of concern: A large international panel of experts published a new definition of myalgic encephalomyelitis in the Journal of Internal Medicine, recommending it replace CFS - the name and definition.

    I asked if substituting ME/CFS would clarify, but I don't think that it would. On reflection, the statement may be more accurate as it stands.

    The ICC evolved out of the CCC, identifying a subset of ME/CFS patients for study. In terms of nomenclature, we could end up with ME and ME/CFS, ME/CFS being the more inclusive term. PR and others would then advocate for the more inclusive ME/CFS, and CFS would become an historic footnote.

    Whether ME/CFS ultimately suffers the same fate would be a matter for future research to decide. Envisage the smooth transition....
  5. rlc

    rlc Senior Member

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    Hi Ember, yes the statement of concern by the CAA was

    A large international panel of experts published a new definition of myalgic encephalomyelitis in the Journal of Internal Medicine, recommending it replace CFS - the name and definition.

    The point is that the CAAs statement is one hundred percent False!!

    The ICC is not calling for their criteria and the name ME to replace CFS the name and definition.

    They are saying very clearly that there are two different illnesses, ME which the people who fit the ICC criteria have, and CFS which is the name for all the people left over who dont fit the ICC criteria, and they are to remain labeled with CFS using either the Reeves or NICE criteria.

    They also include Jasons study findings that only 10% of the people diagnosed with CFS using the Reeves criteria actually have ME.

    The ICC clearly states Individuals meeting the International Consensus Criteria have Myalgic Encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for Chronic Fatigue Syndrome.

    And The scope if this paper is limited to criteria of ME and their application

    The CAAs statement is as false as it is possible to get and they are either stunningly incompetent or deliberately twisting what the ICC is saying to suit their own agenda.

    So in regards to I asked if substituting ME/CFS would clarify, but I don't think that it would. On reflection, the statement may be more accurate as it stands

    The CAAs statement is completely inaccurate as it stands, and should be removed immediately!!!!!!!

    Re The ICC evolved out of the CCC, identifying a subset of ME/CFS patients for study. In terms of nomenclature, we could end up with ME and ME/CFS, ME/CFS being the more inclusive term. PR and others would then advocate for the more inclusive ME/CFS, and CFS would become an historic footnote.

    The ICC makes it very clear that the names of the two different illnesses are ME and CFS there is no ME/CFS anymore!!! The ICC didnt evolve out of the CCC. The writers of the ICC used the CCC as a starting point, and by the time they were finished there was nothing left of the CCC including the name ME/CFS, as I said earlier the principal writers of the CCC were involved in the writing of the ICC and they have now said that the CCC was a flawed document, and consigned it to the waste paper bin, ME/CFS already is a historical footnote!!! The absolutely worst option is to have a more inclusive name because ME and CFS are not the same illness! and it is peoples continual attempts to portray them as the same illness that has lead to research going nowhere because it is being done based on the idea of looking for one cause for groups of people with very different illnesses and therefore producing endless conflicting results.
    People have to accept that they cant just make up the names and symptom lists for their illness, the only people who can name diseases are The World Health Organization, people also have to realize that if they try and do advocacy using names like ME/CFS and CFIDS that journalists will look the names up and see that they are not medical names and just think that the person writing to them is nuts. And no researcher on the planet is going to get government funding for research on ME/CFS because it doesnt exist. More information on why it is essential that the correct medical names are used can be found here http://www.hfme.org/problemswithmecfs.htm

    RE Whether ME/CFS ultimately suffers the same fate would be a matter for future research to decide. Envisage the smooth transition....

    The only thing that is stopping the correct names being used, ME and CFS, is the US orgs, and the patients that are refusing to accept this. People cant make up their own rules, if they match the ICC symptoms they have ME, if they dont they have CFS, there is no such thing as ME/CFS, and the work of doctors like Hyde shows that there is no such thing as CFS and that they are all misdiagnosed and have other known diseases that their doctors have missed, The people in the CFS group are the lucky ones they have a chance of getting a correct diagnosis and a cure, whereas a cure for ME might still be a long way away. If anyone reading this doesnt exactly fit the ICC definition and therefore has CFS not ME, I recommend reading these articles.

    http://www.hfme.org/misdiagnosis.htm

    http://www.hfme.org/wheretoaftermisdiagnosis.htm

    All the best
  6. Ember

    Ember Senior Member

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    The ICC evolved out of the CCC, identifying a subset of ME/CFS patients for study. On it's own, that claim seems true based on these quotations:

    The Canadian Consensus Criteria were used as a starting point, but significant changes were made,

    "...the primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low-threshold of fatigability and symptom flare in response to exertion. This will enable like patients to be diagnosed and enrolled in research studies internationally under a case definition that is acceptable to physicians and researchers around the world."
  7. Jill McLaughlin

    Jill McLaughlin *****

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    There is no such thing as ME/CFS. ME is the diagnosis, existing decades
    before CFS was invented, so is in no way a subset of some nonexistent
    hybrid.

    CCC was used as a starting point but is not what the final product reflected.
    If someone were studying the holocaust, they could do a paper on Hitler.
    Then do a paper on Goebbels, and use the paper on Hitler as a starting point.
    This does not make Hitler Goebbels.

    -----
  8. Ember

    Ember Senior Member

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    Who owns meaning? ME/CFS is defined by the CCC. No definition has been destroyed.
  9. Jill McLaughlin

    Jill McLaughlin *****

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    ME/CFS is used in the CCC but is not the generally accepted use or
    meaning. This obsession with the CCC seems over the top.
    It was published almost a decade ago in a journal that no
    longer exists.

    ME/CFS is just another made up term that can mean different things
    (like CFIDS). It is not a recognized diagnosis. There is no ICD code for
    billing/insurance purposes. Officially or medically speaking there
    is no such thing.

    So if it's ME, call it ME. If it's not, call it CFS or whatever you want.
    Adding CFS and combining them serves no purpose other than
    to create more confusion.

    Jill

    -

  10. rlc

    rlc Senior Member

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    Hi Ember, the way it works in Medicine and Science is that if the authors a paper, then right another paper that says that the original paper was wrong, it is then understood by the entire worlds medical and scientific community that the original paper is obsolete and that its authors no longer support it, and that everyone should now follow what is in the newest paper.

    This is exactly what has happened, the ICC writers include the principle writers of the CCC, so there for they are saying that their original work the CCC is wrong, and everyone is to now follow the ICC, the CCC has been destroyed by its own authors, and consigned to the waste paper bin, and they have also made it abundantly clear that the term ME/CFS was a mistake and no longer support its use and that there are two diseases ME and CFS. Its done and dusted the CCC and ME/CFS are now historical footnotes. Everyone has to except this and move on!!

    Bruce M Carruthers, Marjorie I van De Sande, Kenny L De Meirleir, Nancy G Klimas and Peter Powels have destroyed the CCC and ME/CFS!!!!!

    The continual use of the term ME/CFS is only giving the Wessely school ammunition to keep systematically abusing the UK patients, inverting his version CFS/ME to ME/CFS is helping no one and is just propagating the myth that the two different conditions are somehow related!!

    The writers of the ICC have collectively, more than 400 years of experience diagnosing and treating ME patients and have seen approximately 50,000 ME patients, they know what theyre talking about, people need to drop their previous beliefs and except what they have said and start acting in accordance with the new information, not trying to defend the status quo and mistakes of the past.

    The patients in the US have a fantastic opportunity sitting there waiting for them to do something about it. Because the CDC now recognizes ME as a separate disease to CFS, the door is wide open for the US patients to get organized take action along the lines I have previously outlined, and within in a few years ME research could be being founded by the US government at the same kind of level that the likes of AIDS and cancer are, and researchers could be investigating it all around the world.

    The only thing that is now stopping this happening is that the US patients have not realised what is going on, thanks largely to the complete failure of the US orgs. Which has lead to a situation where nobody is demanding any research into ME, if the US patients dont make the government aware that there are a lot of ME patients that need help, then there is no way that the US government will fund it.

    If people will embrace the fact that ME and CFS are different diseases and that the CDC has given them the green light to do something about it there is the potential for massive and rapid change in the situation, If people refuse to accept it and continue to believe that they are the same disease despite all the scientific evidence and continue to promote terms like ME/CFS nothing will change and everybody will remain sick until the day they die.

    This is a matter of life and death, people are dying from ME, and diseases that have been misdiagnosed as CFS all round the world, every second counts!!!!

    People also need to realise that the rest of the world follows what the US medical profession says, if changes are made in the US it will help the entire world, the lifes of every ME and CFS patient in the world are in the hands of the US patients and whether they take action based on the correct scientific information that has been provided by the likes of the ICC.

    If nothing is done to make the change no patient in the world will be helped, the people who will benefit from this are the same ones that always have and they are described here http://www.hfme.org/whobenefitsfromcfs.htm

    All the best
  11. Ember

    Ember Senior Member

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    I see no evidence for this claim. The ICC seems more like evolution than repudiation. A subset has been identified for further study.
  12. Firestormm

    Firestormm Guest

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    Dudes your links from the main article don't seem to be working 'internal server error' or some-such!!
  13. Firestormm

    Firestormm Guest

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    rlc I have been unable to read all the thread there seems to be a 'glitch' that will not allow me to - but I have read some. Just a small point:

    There is NO NICE criteria for Chronic Fatigue Syndrome - at least if ever there was it is now used to diagnose CFS/ME collectively. CFS and the TWO ME's are interchangeable terms meaning - effectively - the same thing (at least in the eyes of NICE et al.).

    I believe the above statement to mean that the ICC believe the criteria used by NICE are not adequate enough to distinguish between what they believe are two distinct conditions. Would you agree?

    Apologies I will try and read through all the posts. But this debate about the ICC is repeating itself across so many threads now it is getting confusing I think, and I don't want to keep repeating things in a circular manner.
  14. Jill McLaughlin

    Jill McLaughlin *****

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    Evolution? ME existed decades before CFS or ME/CFS were ever invented. Something
    which is in effect exclusionary cannot be a subset. The spin is over.

    And by the way, someone was saying that patients or advocacy had nothing to do
    with it and was just the authors own epiphany. The criteria states under
    acknowledgements:

    "The panel would like to gratefully acknowledge the
    participation and support of patients and their families
    in the research described herein and upon which these
    guidelines are based."

    Jill

    --


  15. Firestormm

    Firestormm Guest

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    And that's the crux of the issue isn't it Jill. Is the 'ME' that existed before Ramsay the same as the 'ME' as defined now by the ICC? Is Myalgic Encephalomyelitis the correct name for the ICC? What has changed to persuade and convince the authorities that the ICC is sufficient to determine two distinct conditions? Up to this point there has been insufficient evidence produced of a quality that justifies the name.

    I still cannot see the CDC (or whatever the necessary authority is over there) taking the ICC and separating the one condition into two. Not based on these criteria and a lack of definitive evidence for 'muscle' and 'brain/spinal inflammation'. Is it not time that the WHO was challenged? I mean it only ever was a name placed into a category. The interpretation/definition was left to the authorities. Mind you it could be argued that the WHO has been challenged repeatedly - just not always to the satisfaction of patients I guess.

    Thank you. I for one had not noticed this before.
  16. Firestormm

    Firestormm Guest

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    I think I mentioned before that there is perhaps a need (even without the specific testing I think necessary to support the claims made in the ICC) for the ICC to be compared to the CCC in a study of a significant patient cohort.

    Let us see how many patients with CCC ME/CFS are determined to have 'ME' under the ICC. The same could be true for a comparison of Fukuda with CCC (done by Jason), and Fukuda with ICC - I suppose.

    Something else has to happen with these new criteria before they gain gravitas. The question is what? Neurologists for example employed by the NHS in the UK are not going to consider someone diagnosed (if such a thing is even possible) with the ICC as having a more clearly defined neurological condition - than they would (or rather don't) currently for CFS/ME under NICE Guideline 53.
  17. Ember

    Ember Senior Member

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    The ICC does graciously acknowledge the participation and support of the patients and their families in the research described herein. The focus is on the research.

    In limiting its scope to criteria of ME and their application, the ICC simply removes its subset of ME patients from other definitions (Reeves and NICE) and invites further research on them: The compulsory critical criteria allow comparable data to be collected in various locations and may assist in developing consistent biomarkers and further insights into the mechanism and etiology of myalgic encephalomyelitis.

    I believe ME-ICC patients continue to be included in the more general CCC (ME/CFS) definition, the ICC's stated starting point.
  18. rlc

    rlc Senior Member

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    Hi Firestormm. Re I believe the above statement to mean that the ICC believe the criteria used by NICE are not adequate enough to distinguish between what they believe are two distinct conditions. Would you agree?

    YES!!! That exactly what they are saying. The NICE criteria and the Reeves criteria are both CFS criteria they have nothing at all to do with ME.

    The term CFS/ME was invented by Simon Wessely, to try to deceive people that they are both the same illness. He has had to resort to these tactics because in the UK ,there has since the invention of CFS been a strong underground resistance, by patients and some Doctors like Richardson, who have fought to keep the truth about ME alive, this resistance is being continued by the likes of professor Hooper. So Wessely and the UK government have resorted to underhand tactics like using the term CFS/ME to confuse everyone, and have even used the state secrets act to suppress information.

    In the US there has been virtually no resistance to the Lies ,and the US orgs have just been spouting out the garbage provided by the CDC, and have employed CDC doctors, and silenced anyone in their ranks who tried to fight for the truth, so there has been no need for them to invent terms like CFS/ME, they have brainwashed the US patients so much that most of them just think ME is a alternative name that the UK uses for CFS.

    Now the CDC has changed its stance and acknowledged that ME and CFS are totally different diseases, and nobody has done anything about it, which is why Im trying to encourage the US patients to do something about the amazing opportunity that is open to them.

    All the best
  19. rlc

    rlc Senior Member

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    Hi Firestormm. Re I still cannot see the CDC (or whatever the necessary authority is over there) taking the ICC and separating the one condition into two

    The CDC has already separated the one condition into two!!!!!!!!

    This is the CDC statement

    The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

    Link http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html

    The CDC did this before the ICC, its just that none of the US orgs will do anything about it!!!!!

    US patients are free to demand that their government do something about it and start demanding research and assistance for ME patients. But until they demand it, the government wont do anything, they cant justify spending hundreds of millions on research, when nobody is letting them know there are any ME patients!!

    If this had happened in the UK, the Uk patient groups would have seized on this, taken dramatic action and it would all be over very quickly.

    Re Something else has to happen with these new criteria before they gain gravitas. The question is what? Neurologists for example employed by the NHS in the UK are not going to consider someone diagnosed (if such a thing is even possible) with the ICC as having a more clearly defined neurological condition - than they would (or rather don't) currently for CFS/ME under NICE Guideline 53.

    Nothing will ever change in the UK because the UK government knows what ME is and has deliberately, suppressed all the evidence, they are refusing to comply with the WHO guide lines, and they do not have any authority to make up disease names like CFS/ME.

    The only way it will change in the UK is, if the US patients get their government to do something about the fact that they now acknowledge that ME and CFS are different conditions.

    The US is the world medical power and everyone else follows their lead, if they start actively researching and promoting the existence of ME then everyone else will follow. This will then just leave the UK as the only country on the planet that is denying its existence. A position that will be impossible to maintain, or they will be facing massive legal action, and charged for breaching the UN declaration of human rights http://www.un.org/en/documents/udhr/

    Article 25.
    (1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and (medical care!!!!!!) and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.

    Article 5.
    No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment

    Its really up to the US patients to save everyone else!!!! And their government has given them the opportunity to do so.

    All the best




    .
  20. Firestormm

    Firestormm Guest

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    I am British by the way. I don't buy into this being the Wessely influence - far from it. I actually believe it to be the influence of the Royal College of Physicians and probably the Association of British Neurologists, but also General Practitioners who saw the main common symptom as unexplained fatigue.

    They simply never accepted that the patients being presented (and let's face it 'we' are part of a MASSIVE cohort now) had what they believed was 'Myalgic Encephalomyelitis'. And this could be for several reasons, but I personally think the main one being that no research had been able to prove (still hasn't to any degree of satisfaction) that patients were showing demonstrable inflammation of the brain and/or spinal cord.

    Granted there is an argument to say that the two MEs (Encephalomyelitis and the more general Encephalopathy) were added to appease patients and their representative organisations - but the distinctions were blurred long before that happened. Even when 'Myalgic Encephalomyelitis' was the only thing in existence - as when I was originally diagnosed - there was general concern that what it meant was not what had been proved.

    Now I know some patients have undergone various tests (that I suspect many of us have not) and inflammation may well have been diagnosed. For others there have been abnormalities shown (lesions and what have you) of the brain. But no research has ever been able to demonstrate to the satisfaction of anyone that there exists inflammation to justify the name.

    You cannot now scan everyone in the 'pot'. You need to be able to demonstrate through quality research that the name justifies the condition being presented, and I do not believe that the ICC is sufficient to do that. I think Myalgic Encephalomyelitis as featured in the WHO is actually referring to a distinct disease that may never have been adequately described or even proven to exist.

    Here's a question if I may. What percentage of those now labelled with 'CFS' or 'CFS/ME' do you think will (when the ICC criteria are applied), receive the diagnosis of Myalgic Encephalomyelitis? 5% 10% 90%? Because I believe the criteria are too broad and they will simply mean the majority of those with 'CFS' will jump across the 'ME' - and that cannot be right can it? Not without testing that PROVES inflammation of the brain and/or spinal cord.

    This cannot be a lesson in semantics. If you or I were sent for an MRI scan to see if there was evidence of 'inflammation' and they could not find any - what then? Maybe the previous research hasn't looked in the 'right place' or used the 'right scan' or maybe 'inflammation' can be adequately proved through cytokines? The thing is none of these are in the ICC and in all this time nobody has been able to produce the research of sufficient quality to support claims that Myalgic Encephalomyelitis is the 'correct' definition after all.

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