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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: Ch, Ch, Ch, Changes...Myalgic-encephalomyelitis Now and Then: 75 Years of ME

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 14, 2011.

  1. Jill McLaughlin

    Jill McLaughlin *****

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    Thank you Ric - you explained everything very well. (Beyond hurling insults,
    I don't know what Michael was referring to. I don't know what PH is.)

    I posted here to actually commend Cort for his write-up. I think he did a good job.We have an actual ME definition.

    There is really no such thing as ME/CFS. It is another made up term that can be
    used to mean different things. ME and CFS are not the same but ME/CFS implies
    that they are. It isn't even a new name. Would AIDS patients have settled for
    Gay Plague/AIDS, or would MS people have accepted Hysterical Paralysis/MS.

    IMEA is not an ME group, but all about ME/CFS, as is the mecfsforums, from
    which this group arose. There was a lot of harassment and rudeness there also,
    but was ALL one sided, with a core inner circle controlling the show.

    The testing issue may be somewhat as Cort said, but if drs have a def and can
    relate to the disease being presented, they can figure out what to test for. As a
    whole the US groups are working against us.
  2. Firestormm

    Firestormm Guest

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    Afternoon,

    Of course you are right, if you believe - contrary to the CDC* and NICE in the UK, that 'ME' and 'CFS' are different diseases.

    It is also true to say that there has not been a 'criteria for 'ME'' before now (at least I am fairly certain that is true at least in the sense of a 'consensus' and an 'international' one that advances 'PENE' as the modus operandi).

    I have been reading of prevalence estimates (though quite how this is possible I do not know) suggesting that prevalence of 'ME' is as little as 10% of the patient population currently diagnosed with 'CFS' or 'CFS/ME'.

    However, I suspect these estimates are the ones that are promoting 'ME' as being a relatively rare condition and one that adheres strictly to the actual name itself, i.e. inflammation of brain/spinal cord.

    I doubt very much if the ICCME (as it stands now) will result in many patients being 'weeded out' from their present diagnosis and/or label.

    The ICCME is being presented as something that should be adopted instead of Chronic Fatigue Syndrome and not co-existing as a distinct disease. Do you see what I am saying?

    For 'many' of those posting on forums etc. the 'problem' with CFS is that it is all about 'fatigue', whereas Myalgic Encephalomyelitis (and please we should refer to it as 'Benign Myalgic Encephalomyelitis' in accordance with the WHO categorisation that is quoted everywhere), lends greater legitimacy to the condition - at least in the eyes of some who support it.

    I dare say some also think this adoption will get the 'psycho-lobby' of our backs. Another misconception I think and not really a reason for pushing for a name-change is it? Not scientific and not justifiable.

    Anyway...

    Chicken and Egg situation then is what you seem to be suggesting? We need the criteria before we can get research actually aimed at Myalgic Encephalomyelitis. Hmmm... Not according to the authorities we don't. Same disease, innit :rolleyes:

    To some extent Encephalopathy was a compromise in the medical world over here in the backwaters of UK-ville. Myalgic Encephalopathy and Encephalopathy in its many guises was something that medical professionals felt more comfortable in using - and for diagnosing purposes.

    That is not to say that before 'CFS' came along, when 'ME' was as written, there was no research - on the contrary. It is just that as far as the authorities were concerned the disease could not be proven and was an inappropriate nomen for those who were being diagnosed in such increasing numbers.

    Personally, I am torn now between seeing this ICCME as a backward step and seeing it as something 'new'. I do think that you can test for the symptoms more effectively, and I do also think that those same tests can be applied to patients who are being diagnosed with 'ME/CFS' or 'CFS/ME' or 'CFS' too for that matter.

    What difference does a name make? Now there's an article for you Cort ;)

    (*my assumption being that if anything they will merge 'ME' with 'CFS' viz the UK precedent. Though I could be wrong and half-hope that I am. Go USA!)
  3. Nielk

    Nielk

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    This last paragraph makes no sense. Just because you can define a disease does not mean you can have definitive tests for it. You are wrong in this statement. Anyone who knows anything about disease will know that.
    What is really obscure to me is that you keep mentioning "YOU AMERICANS" where are YOU from?
    On your Facebook page where you have thousands of members you state that you are in Rhode Island, US.
    So, which is it?
  4. Jill McLaughlin

    Jill McLaughlin *****

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    Firestorm, the diagnosis is key. Throwing ME into the CFS mix has caused all
    of the problems. Yes ME can be weeded out. It is not a fatigue syndrome. We get out or
    nothing will change. Repeating a lie does not make it true, nor does the made up
    ME/CFS nonsense. No more made up "compromises" like encephalopathy, ME/CFS
    or CFS/ME. CFS was our slave name; ME/CFS is our Stockholm Syndrome name.
    Here's a hint - this is what Wessely does. So yes Firestorm, your conclusion was
    correct - go USA!
  5. Jill McLaughlin

    Jill McLaughlin *****

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    Nielk - Having a distinct and recognizable definition means that testing is possible
    and reliable. That's what's missing with CFS. Rhode Island is in the US so
    yes we are Americans!
  6. Nielk

    Nielk

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    Having a distinct and recognizable definition does NOT mean that automatically testing is available. Maybe, one day I hope they will find the correct testing tools.
    I will repeat, this is not the only disease that is recognizable but does not have definitive testing tools.

    By "us", you mean Americans because in your previous post you left that part out. Since you are American - by saying US, you mean Americans. So, what you are saying is that all US groups are working against US patients???????????????????????????????????????????????
  7. Firestormm

    Firestormm Guest

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    I guess then you chaps had better campaign hard at the following meeting. Because if they do merge the two (assuming 'ME' is actually recognised as distinct by the authorities in the US at present), then it could be a case of 'welcome to the club sandwich' ;)

    'The next meeting of the U.S. Department of Health and Human Services CFS Advisory Committee will be a potential venue for discussion of impacts on funding and policy (including Social Security disability), with a recommendation that the U.S. federal agencies adopt ME/CFS as a replacement for CFS still under review by the Secretary of Health and discussion of case definition a regular feature of agency reports and discussion.'

    I don't have a date for that - do you?

    What did you make of the CFIDS review: http://www.research1st.com/2011/07/25/me-case-definition/ ?
  8. Nielk

    Nielk

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    Firestorm,

    You actually sit there and think up these non-sensible statements? Why? what is your aim?


    Can you logically explain this statement?
  9. Nielk

    Nielk

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    Jill,

    The ICC DID adopt the name M.E. I don't know how much clearer they could have been in their statement of it. The is not one mention of ME/CFS in the whole paper so, I don't know why you are fixated on that point. It seems that every sentence you mention ME/CFS and this is not relevant anymore. You didn't like that name? fine - you are entitled to your obsessive opinions. The name that this international consensus chose to use is ME. You say - it's not a new name? fine. It doesn't change the fact that IT IS A NAME CHANGE from CFS to ME. No one said that the name ME has been use in some countries. It doesn't take away the fact that now, here, in this paper, the authors changed the name from CFS to ME. It doesn't matter if you or I like the name. It is the fact as stated. Whether it will be universally accepted by health governmental agencies remains to be seen.
  10. Jill McLaughlin

    Jill McLaughlin *****

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    ICC updated the ME def and adopted the name AND that criteria. This is not the
    CFS criteria, thus is not a name change. Maybe it could be better or more
    specific but the basics are there. Like you said, not one mention or hint of
    ME/CFS or CFS/ME. The perfect should not become the enemy of the good,
    as most US groups are doing. And advocacy should not just be about
    what remains to be seen, it should be proactive.

    Jill


    ---

    Nielk;200629] wrote:
    Jill,

    The ICC DID adopt the name M.E. I don't know how much clearer they could have been in their statement of it. The is not one mention of ME/CFS in the whole paper so, I don't know why you are fixated on that point. It seems that every sentence you mention ME/CFS and this is not relevant anymore. You didn't like that name? fine - you are entitled to your obsessive opinions. The name that this international consensus chose to use is ME. You say - it's not a new name? fine. It doesn't change the fact that IT IS A NAME CHANGE from CFS to ME. No one said that the name ME has been use in some countries. It doesn't take away the fact that now, here, in this paper, the authors changed the name from CFS to ME. It doesn't matter if you or I like the name. It is the fact as stated. Whether it will be universally accepted by health governmental agencies remains to be seen.[/QUOTE]
  11. Jill McLaughlin

    Jill McLaughlin *****

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    I'm not going to the CFSAC meeting regardless. Many people have given their
    objections and problems with this ME/CFS claptrap. Even though a small
    group of people set this up at the meeting, it does not represent a
    good deal of the patient community. Even though this list is mostly
    CAA/Pandora/MCWPA people, it is not just us two.

    Jill


    -----
  12. Ember

    Ember Senior Member

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    Reeves was left standing:

    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.

    The CCC definition of ME/CFS has been changed:

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

    No other fatiguing disease has 'chronic fatigue' attached to its name e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue except ME/CFS.

    ME/CFS? Transitional. History. Time to move on.
  13. Enid

    Enid Senior Member

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    Quite agree Ember.
  14. Jill McLaughlin

    Jill McLaughlin *****

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    The ICC is an ME definition. Not instead of CFS or ME/CFS.
    The CCC is an ME/CFS definition, so this is not an updated CCC definition.

    Jill

    ------

    Originally Posted by Firestormm
    The ICCME is being presented as something that should be adopted instead of Chronic Fatigue Syndrome and not co-existing as a distinct disease.

  15. Nielk

    Nielk

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    Jill,

    I thought that the name didn't matter to you. Is it just that you have to have the last word? There is another thread for that. You can repost there.
    Roy S likes this.
  16. Firestormm

    Firestormm Guest

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    'Firestorm,

    You actually sit there and think up these non-sensible statements? Why? what is your aim?

    'Anyway...

    Chicken and Egg situation then is what you seem to be suggesting? We need the criteria before we can get research actually aimed at Myalgic Encephalomyelitis. Hmmm... Not according to the authorities we don't. Same disease, innit'

    Can you logically explain this statement? '

    Of course Nielk though it seems perfectly plain to me.

    I believed that Cort was saying we need criteria about ME before we can research ME before testing for ME becomes available. Chicken and Egg.

    However, the authorities here in the UK believe that ME and CFS are the SAME THING and therefore will need convincing (hard) that research does not ALREADY EXIST.

    Even and especially the ICCME quote research that WAS NOT about this distinct illness ME. It was at best about CCC ME/CFS.

    If you truly believe that ME is fundamentally different to CFS then you need research to PROVE IT. And Cort - I presumed and he is not alone in this believe me - was saying we have to have ME specific criteria BEFORE the ME research and the ME tests can be produced.

    OK?
  17. Firestormm

    Firestormm Guest

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    Right. One last time (though probably not).

    Benign Myalgic Encephalomyelitis is a distinct disease recognised by the WHO.

    That means it is a different disease from [chronic] fatigue syndrome. It also mean something different and specific too for that matter: namely brain and/or spinal cord inflammation.

    OK? Are we in agreement thus far?

    The ICCME propose that Myalgic Encephalomyelitis REPLACES Chronic Fatigue Syndrome. REPLACES IT. That means their version of Myalgic Encephalomyelitis is no longer a separate disease, but more importantly...

    ...this Myalgic Encephalomyelitis is more about PENE than it is about what it actually means: brain/spinal cord inflammation.

    'Encephalomyelitis is a general term for inflammation of the brain and spinal cord, describing a number of disorders:

    Acute disseminated encephalomyelitis or postinfectious encephalomyelitis, a demyelinating disease of the brain and spinal cord, possibly triggered by vaccination or viral infection;[1][2]
    Encephalomyelitis disseminata, a synonym for multiple sclerosis;
    Equine encephalomyelitis, a potentially fatal mosquito-borne viral disease that infects horses and humans;
    Myalgic encephalomyelitis, a syndrome involving inflammation of the central nervous system with symptoms of muscle pain and fatigue; the term has sometimes been used interchangeably with chronic fatigue syndrome, though there is still controversy over the distinction.[3]
    Experimental autoimmune encephalomyelitis (EAE), an animal model of brain inflammation.' Wkipedia


    IF Chronic Fatigue Syndrome was 'bad' enough as a NAME then this version of Myalgic Encephalomyelitis - in the absence of testing for inflammation or proof of inflammation - is worse.

    It will not fly. All the historical research into Myalgic Encephalomyelitis has FAILED to justify the NAME to the authorities.

    There are good reasons for this and some contentious ones too, namely that no large enough properly defined patient cohort has been adequately tested for inflammation. They have looked but they no find not to the authorities satisfaction at any rate.

    Those wonderful authorities FOR THIS REASON ALONE concluded that Chronic Fatigue Syndrome was a 'better' description for our disease - until evidence could be found and accepted that proved 'fatigue' was not the main symptom.

    So if you propose that Myalgic Encephalomyelitis (dropping the WHO's 'benign') is 'simply a name change' you are suggesting (not you personally), that all those people currently diagnosed with CFS or CFS/ME will - providing they 'meet' these new criteria (and they will in the absence of testing believe me) - suddenly assume the diagnosis of Myalgic Encephalomyelitis.

    That they will - without being tested for it - be deemed to have brain/spinal cord inflammation.

    You know as I said there are those (include Hyde but he ain't alone by any means) who have always felt that Myalgic Encephalomyelitis was a RARE condition.

    If you simply change the name it suddenly becomes more common that Multiple Sclerosis for example. And yet Multiple Sclerosis can be proven. Patients are scanned for inflammation and damage to myelin. It is demonstrable.

    These criteria do not demonstrate that we all have inflammation. And for that single, simple reason these criteria will NOT result in a name change.

    BUT there is an alternative for the authorities and that is one of appeasement. Merge the two along with Myalgic Encephalopathy and BINGO you have one big patient cohort upon whom you can test away to your hearts content.

    This isn't about whether or not I like the ICCME. It isn't. It is about whether or not the authorities will deem them adequate to change the name of a disease to one that is distinct and remains (very much so) unproven.

    It might seem that I am coming across as flippant or even (heaven's forbid) obstructive, but it is not my intention to be like that.

    You guys in the USA may well pull this off who knows? But what difference will it make if you do? What if this huge patient cohort suddenly find that inflammation cannot be proven AFTER they assume the mantle? What then? Because these criteria DO NOT disseminate the 'wheat from the chaff' (not my expression I assure you).

    These criteria can be (maybe even should be) applied to ME/CFS patient cohorts. NOT to a distinct disease without adequate testing WHICH IS ALREADY AVAILABLE.

    Oh. And don't dismiss Encephalopathy either:

    'There are many types of encephalopathy. Some examples include:

    Mitochondrial encephalopathyMetabolic disorder caused by dysfunction of mitochondrial DNA. Can affect many body systems, particularly the brain and nervous system.
    Glycine encephalopathyA genetic metabolic disorder involving excess production of glycine
    Hepatic encephalopathyArising from advanced cirrhosis of the liver
    Hypoxic ischemic encephalopathyPermanent or transitory encephalopathy arising from severely reduced oxygen delivery to the brain
    Static encephalopathyUnchanging, or permanent, brain damage
    Uremic encephalopathyArising from high levels of toxins normally cleared by the kidneysrare where dialysis is readily available
    Wernicke's encephalopathyArising from thiamine deficiency, usually in the setting of alcoholism
    Hashimoto's encephalopathyArising from an auto-immune disorder
    Hypertensive encephalopathyArising from acutely increased blood pressure
    Lyme encephalopathyArising from the Borrelia Burgdorferi bacteria.
    Toxic encephalopathyA form of encephalopathy caused by chemicals, often resulting in permanent brain damage
    Toxic-Metabolic encephalopathyA catch-all for brain dysfunction caused by infection, organ failure, or intoxication
    Transmissible spongiform encephalopathyA collection of diseases all caused by prions, and characterized by "spongy" brain tissue (riddled with holes), impaired locomotion or coordination, and a 40 out of 40 fatality rate. Includes bovine spongiform encephalopathy (mad cow disease), scrapie, and kuru among others.
    Neonatal encephalopathyan obstetric form, often occurring due to lack of oxygen in bloodflow to brain-tissue of the fetus during labour or delivery
    Encephalomyopathy, a combination of encephalopathy and myopathy. Causes may include mitochondrial disease (particularly MELAS) or chronic hypophosphatemia, as may occur in cystinosis.' Wikipedia.


    The two highlighted examples in particular.

    And no I do not think the UK has it 'right' before anyone asks.
  18. Nielk

    Nielk

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    OK. I am too tired to argue about a point that needs no argument. We can sit here and argue our respective opinions to eternity. It is the future that will show us what will actually happen out of this and if it will benefit us.
    No matter what you call it or how you comprehend it, this paper brings validity to our illness as a biological and not psychological one. Can we agree on this point? Is this a good thing? :victory::thumbsup:
    This paper will enable the international community to study a homogeneous group of ill people.Can we agree on that too? Is it a good thing?:victory::thumbsup: This should hopefully result in finding real testing and biomarkers. Can we agree on this too? Is it a good thing?:victory::thumbsup: This in turn might bring about a possible treatment for us. Agree? Good thing?:victory::thumbsup:

    I purposefully did not mention a name for this illness, since you seem to have a problem with it. I will not argue the name with you any longer. You can name it whatever you wish.

    I also won't argue about what the medical profession or government in the UK will do now because #1 I have no idea and #2 No one can predict with certainty.

    This will be my last post about this subject.
    If anyone wants to continue, be my guest.

    Nielk:hug:
  19. Jill McLaughlin

    Jill McLaughlin *****

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    ME is an established disease identity and medical diagnosis.
    ME is ..."a neurological acquired inflammatory disease of the brain
    and CNS..." CFS is a fatigue syndrome. The ME ICC is an updated
    description - of ME - not CFS. Therefore it is not a name change or
    just an update of the CCC (which was ME/CFS). The description is
    such that drs will know what to test for.
  20. anniekim

    anniekim Senior Member

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    Fire, I ask do you recognise that within say the Oxford criteria for Cfs, the only symptom needed is six months of fatigue? And as such someone with solely fatigue, no pene, pain, light, noise sensitivities can be diagnosed using the Oxford criteria as having Cfs, the same name given to someone who has the many listed symptoms just described? Do you feel pene/pem is a hallmark of the illness we at present call m.e ( even if another name may be appropriate once research understands what the pathophysiology of the illness is) or do you think someone who has no pem/pene, neurological symptoms and solely fatigue has the same illness? ( I recognise some people do not perhaps get pene the first few months/ years of developing m.e/Cfs, im talking about people who solely have fatigue for a long time)

    I am also not talking about sub groups within the illness Cfs/me when I talk about solely fatigue, I'm talking about the different fatigue states of a syndrome as Jill mentions and the illness which has pem/pene, neurological symptoms, autonomic dysfunction and so on.

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