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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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"Fatigue is not a disease" - Unger Responds, Advocates Launch Petition

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 11, 2013.

  1. Firestormm

    Firestormm Guest

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    Ever heard the analogy: 'can of worms'? :) Only kidding. Your question gets to the nub of things but will take a while to debate 'which one is better' and 'achievable' if indeed either really are.

    Personally, I surrender :) Always liked Status Quo myself. Was a bit of a 'rocker' in my youth. Some also say I like sitting on the fence and letting others decide my 'fate' - but it doesn't half leave you with a sore bum :) :)

    Sorry. No offense folks....
    snowathlete and golden like this.
  2. Bob

    Bob

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    Interesting thoughts, thanks Mark.

    I haven't yet seen the section of the CFSAC meeting where they discussed the systematic literature review. I'm waiting for the videos to be posted online. But, based on past history of CFS, and my limited understanding of systematic reviews, I'm not optimistic. I think that systematic reviews tend to be very conservative, by their nature, and not at all forward looking or radical. They also don't always necessarily discriminate bad research from good research, or certainly not in robust terms. I don't think we should expect much from it. But I'll be delighted if I'm proved wrong.
    justinreilly likes this.
  3. golden

    golden Senior Member

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    Oh!

    Well what do you do with a can of worms?

    Find a nice meadow, and release them to make rich soil so that the plants grow strong and well :)

    I only interjected so I could make an informed decision to sign the petition or not....

    So far, I think all points have been well raised . But I am not aware of all the goings on.

    I dont think debating should be a cause for concern. But also , even if the petition was suspended and updated - i think this is admirable not shameful.


    Sometimes its a bit embarrassing (pasty tax) etc. sometimes enlightening - 'we have listened to the people and are changing appropriately' .... So I wouldn't worry about losing face.

    Personally , I find the WORST problem to be a 'psychiactric definition by default' -

    And I think this fundamentally creates all this label chaos...


    As for 'compromise' - sometimes its OK and sometimes it really does harm.


    Mark@

    I said to my friend - there is a new campaign that states Fatigue is nothing a disease ...

    And he nearly blew my head off in my defence ....

    It took me ages to try to explain to him it was for my benefit - he would not agree .

    You make very good points. -

    I remember the worst abusive doctor i ever had the misfortune to seek help from.

    I was very flexible in those days , and I stated "I can see the problem with putting names to things " as we discussed labels . (He wrote this in my medical notes in fact. He was agreeing . Then next to it he wrote "Depression".

    This was ridiculous. Depression by default - soon after -another Doctor clearly stated M.E.
    Firestormm likes this.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I don't think I had, unless it started a lot earlier and at a very low level. Mine (at least when it became obvious) followed prolonged stress, over-exertion, depression, diarrhoea, vomiting and malnutrition.
  5. alex3619

    alex3619 Senior Member

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    Hi MeSci , all conditions which can cause dormant pathogens you are already carrying to reactivate as your immune system becomes stressed. I am very mindful of a paper last year that showed every pathogen we are considering might trigger ME infects two things: the gut and B cells.
    Creekee, justinreilly and snowathlete like this.
  6. Enid

    Enid Senior Member

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    I must say as a non scientist that to idiots even like me that continued pressure on the immune system (ie persistant chronic viral/bacterial infections) must wear down. Fatigue is common to all illness - about time they sussed this one out.
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  7. Firestormm

    Firestormm Guest

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    Thanks. Very kind. Sorry I haven't acknowledged before :)


    Hmmm...

    For the record I'd assumed 'fatigue is not a disease' came from Unger given it was in the title of this article; sorry about that dude.

    You know I'd written some bumf about my ruminations on this phrase but then deleted it all to spare you further pain ;)

    Let me just say that I disagree with some of the thinking over this phrase and the way it has been used.

    Patients in general do not like the word fatigue because the single word does not sum-up all that they are experiencing. How can anyone encapsulate all of 'this' in a single word? How dare they.

    Is 'chronic fatigue' any better? Hmm... if 'fatigue' is experienced by someone with MS as a symptom caused by the inflammation of the myelin sheath - then is this a satisfactory description when applied to someone with - I don't know - cancer?

    And so 'our' chronic fatigue is actually far worse than that experienced by someone with only cancer-induced-fatigue. Hmmm....

    "This disease is not just fatigue!"

    Any better? You know there are some who believe they do not have 'fatigue' at all. No exhaustion. But still have ME. Interesting, don't you think?

    Fatigue is not a sign it is a subjective symptom - though probably not one that patients actually use: so they might say 'exhausted' and a doctor interprets this as 'fatigue'.

    The issue here is also that fatigue is not specific - it doesn't allude to a cause. And it can't - at least not yet. Although patients would rather see 'immune dysfunction' or something even 'brain inflammation' rather than the fatigue that they feel. Interesting...

    As a patient I'd like to have something that labels me with a word people recognise as something serious - a reflection of my inability to function at normal levels; a reflection of my struggle; my pain. People who don't know me.

    I'd really like people to ask me 'what's wrong?' and for me to be able to tell them my diagnosis and for them to say 'well you are coping remarkably well. I've heard of that. Very nasty.'

    A word like 'cancer' would do it. Of course I have no idea what it's like to live with cancer or to live with the effects of chemotherapy. But a name like cancer carries connotations that a word like 'fatigue' doesn't.

    However, our label is not just 'fatigue' it is Chronic Fatigue Syndrome. Like it or not. And fatigue is not a disease but CFS is. To the extent that it is currently reflective of patients who present with a cluster of symptoms - one of which is 'fatigue' as defined by whatever criteria a doctor cares (or doesn't care) to use.

    Unfortunately, few diseases carry the connotations that cancer does and CFS is one of them. But CFS as a name could be improved but then so could understanding - through education. The name will be changed as and when people are phenotyped I would imagine. You'll see them 'drop-out' into other small pots.

    So this is really about how doctors diagnose their patients - if you read that lady's article from which the quote appears; isn't it? That they shouldn't 'simply' diagnose someone because of their reported or interpreted 'fatigue-state'.

    That there's more to this diagnosis - this disease - than simply fatigue. And there is.

    Ha! And I said I was going to spare you :) Promise my earlier draft from yesterday was worse :nerd:
  8. Nielk

    Nielk

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    Yes, I think that we would all like that , but I think the issue here is much more grave and dangerous. The problem as I see it with the current name of CFS is that the medical community has such a dismissive way of dealing with the patients it labels, that it borders on dangerous.

    Because of my CFS diagnosis, my local GP thinks of me as a complainer and exaggerator. When I tell him that I have been bed bound for months, he gives me a smirk and thinks of what new antidepressants he can shut me up with. When 6 months ago, I came in with scary new symptoms of numbness in my lips and tongue, he laughed it off as a sign of stress. Knowing better than that, I followed up with a neurologist who took an MRI of the brain. They found I had a brain tumor for which I needed radiation therapy.

    I spoke about this in my CFSAC testimony. Very few doctors will take this illness seriously with the current name of Chronic Fatigue Syndrome. This is where the viscous cycle begins. Unger says, before we can change the name or choose a set of criteria we need studies, research, biomarkers..etc. But, how can we have the proper studies and research when so few are taking this illness seriously or when there is no funding for us available. If we had a proper name and a proper set of criteria, it will naturally follow with more interest and funding......
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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I expect all people are carrying inactive pathogens from past infections, and that the difference with ME is additional stressors or combinations of stressors.

    It still doesn't account for those of us who get very little pain so would seem to fall through the CCC definition. Unless I have missed something. My IQ is rather lower than usual!
  10. Mark

    Mark Acting CEO

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    A few recent posts wondering about fatigue and pain have reminded me of Rayhan's thought-provoking presentation at IiME (see http://phoenixrising.me/archives/17049). A couple of them on this thread, so I'll just briefly summarize the idea.

    In GWI, they seem to be finding two groups of post-exercise response: post-exertional fatigue and post-exertional pain. They found correlations between those findings and their brain scans: it appeared that those with post-exertional fatigue had increased compensatory brain activity in activity-related areas of the brain, whereas those with post-exertional pain had increased compensatory brain activity in pain-related areas of the brain. It's a fairly small study, and not published quite yet I think, but it suggests an intriguing hypothesis. Their basic idea from these findings is that the fundamental problem is some area of the brain that is damaged, and under physical stress, the brain compensates for that by using other areas of the brain; if it uses 'pain areas' you get post-exertional pain, and if it uses 'fatigue areas' you get post-exertional fatigue. A very rough and crude description on my part, but I think that's the basic idea. Since seeing that presentation, I find that I thinking about it quite a bit: the distinction between fatigue and pain as two kinds of downstream symptoms, and the idea that these different symptoms might stem from a common source of dysfunction, might make a lot of sense in terms of understanding some of the more mysterious aspects of the heterogeneity of ME/CFS.
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  11. alex3619

    alex3619 Senior Member

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    Hi Mark, even if that describes much of the pathophysiology it does not mean the cause is in the brain. The brain could be compensating for peripheral damage, or even just deranged peripheral signals (including small fiber polyneuropathy).

    In the case of ME there is now ample evidence of CNS dysfuction, including lesions, and also peripheral dysfunction. It might however help explain some of the range of symptomology in ME, and also some of the data coming from studies like the Light's exercise research. Presuming of course that similar findings can be made in ME, which might not be the case.

    One of the things I keep asking myself is what if many of these disorders are the same disorder, but they involve so many systems that individuals vary greatly in their response? Such would then appear to be multiple syndromes: fibro, ME, IBS, MCS, GWI etc. There would also be considerable overlap between syndromes, which is what we also see.

    If Rituximab pans out then most theories of ME are dead or dying, at least with respect to the responding subset. Every theory will have to take into account why depletion of B cells results in a cure or substantive remission.

    Alex.
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  12. Sasha

    Sasha Fine, thank you

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    Thanks for that summary - unfortunately I was experiencing post-exertional stupidity o_O when I read about his work and couldn't get my head round it so this is most helpful!
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  13. rlc

    rlc Senior Member

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    Hi Golden, RE

    The main differences between the CCC and ICC criteria are, that the CCC is a criteria for ME/CFS it states that ME and CFS are the same disease! It only states that some more symptoms should be required for a diagnosis than are included in the CDC Fukuda definition.

    A review of faults in the CCC can be found here http://www.hfme.org/canadianreview.htm

    This makes the entire point of the letter to Kathleen Sebelius secretary of DHHS completely redundant, because they are asking for ME to be seen as a separate disease to CFS, and are asking for the use of the CCC, but the CCC says that ME and CFS are the same disease.

    Which is why I urge people not to sign this petition, because it will only continue the false view that ME and CFS are the same disease.

    The principle author of the CCC is the same as that of the ICC, in the ICC they corrected the mistakes of the past, and stated that it is a definition for ME only, and stated that ME is not CFS.

    Another main difference between the CCC and the ICC, is that the CCC states as do the CFS definitions such as Fukuda that adult patients must have the symptoms for six months before they can be diagnosed.

    Making patients wait six months before they can be diagnosed is from a medical and patients suffering point of view in my opinion complete madness!!

    The ICC has corrected this and doesn’t require patients waiting for six months before they can be diagnosed.

    A more detailed account of some of the faults in this petition can be found here http://www.mecfsforums.com/index.php/topic,16318.0.html

    My personal opinion is that the use of the CCC, will be disastrous for ME patients. Because it says that it is the same disease as CFS, and the only real difference between it and Fukuda is that a few extra symptoms are required. By continuing the wrong belief that ME and CFS are the same disease it only plays into the hands of the likes of the CDC, it gets them off the hook for not investigating ME.

    However these are my opinions and I do not wish to try and force them on others.

    I would though suggest that every one considering signing this petition makes themselves very acquainted with the real facts before signing it. Unfortunately the US orgs have followed their usual protocol of asking for peoples signatures without consulting people first, which makes people feel rushed to sign it without a full knowledge of the facts.

    My recommendation to people because this is such an important matter, is that they take the time to read and fully understand the letter from the US CFS orgs to the Secretary of the DHHS Kathleen Sebelius, the CCC, the ICC, and the International Association for CFS/ME Primer which is being recommended by the US orgs in their letter. And once people have acquired a full understanding of these documents they can make the discussion for themselves, without in my opinion being railroaded into signing it by the US CFS orgs when people don’t have all the fact.

    If people do not have the energy for reading all these often very lengthy and medically technical documents, I suggest that they simple abstain from voting, rather than risking signing a petition that could potentially have a very detrimental effect on their chances of ever getting effective treatment.

    Hope this helps

    All the best
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  14. urbantravels

    urbantravels disjecta membra

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    I say we go back to calling it "atypical polio" and be done with it.
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  15. urbantravels

    urbantravels disjecta membra

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    Or we can just use "Akureyri disease". It will baffle almost everyone - the population of Iceland is only 300,000, and the rest of the world won't recognize the name or have any already-formed prejudice about it. It will sound quite impressive. But we'll have to learn how to pronounce it first.
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  16. SOC

    SOC Moderator and Senior Member

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    Okay, maybe I'm oversimplifying the matter, but sometimes it helps to look at the forest and ignore the trees.

    DHHS needs to understand that there's a lot of us (with supporters) who are seriously concerned about the problem of the name CFS and the use of ridiculously broad criteria like the CDC Empiric or Oxford. The likelihood that anything will happen exactly as requested in the petition is nil. The real benefit of this petition is most likely to be the whack upside the head that some individuals in positions of authority will get -- a realization that there are a lot of us and we mean to start knocking on their doors.

    This is our own version of "I'm mad as hell and I'm not going to take it any more!" It's our line in the sand. This is about standing together and making ourselves heard. It's political, not scientific. The details are irrelevant. Does anyone really expect the DHHS to say, "Oh yes, you're exactly right, nail on the head. We'll do exactly as you say."? Of course not. The details are going to be argued and debated to death after the petition is read however we write it. What is important is that we are seen and heard as a community to contend with. For that we need to forget our differences and get ourselves heard. This petition can do that for us if all of us unite and sign this petition as a message to DHHS that we are here and we intend to be heard.
  17. rlc

    rlc Senior Member

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    Hi SOC, RE

    I was under the impression that one of the things that people are as mad as hell about, was the continual attempts to ignore the existence of ME, and trying to say that ME is just another name for CFS.

    So I don’t see that asking for a Definition the CCC that says that ME and CFS are the same disease is going to help the problem.

    Personally I think people should be getting as mad as hell with the US CFS advocacy groups, who are taking money from ME patients in the form of donations, not even consulting with the patients and then telling the US government that they represent us, and that we would like the US government to recognize that ME is the same disease as CFS, which is what the CCC says.

    Maybe people should be drawing a line in the sand with the US CFS advocacy groups.

    All the best
    golden likes this.
  18. Mark

    Mark Acting CEO

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    The letter calls for the CCC case definition to be used and called "ME", and CFS to be disbanded. Which is pretty much the opposite of what you describe there. I see why you find that a confusing approach when the CCC, at the time, called the thing it defined "ME/CFS", but I don't personally see the name as being as important as the definition, and I don't see any particular problem with now re-naming it as an ME definition rather than an ME/CFS definition. Since the letter itself is calling for ME to be used and CFS to be disbanded, it's clearly not saying that ME and CFS are the same disease.


    "Asking the US government to recognize that ME is the same disease as CFS" is quite obviously the opposite of what the letter to the DHHS says, as anyone can see readily in black and white by looking at the letter. Calling for the use of the CCC as case definition is not the same thing.

    I've never understood the mentality in politics whereby a minority of people on one end of a spectrum of opinion spend most of their time and energy attacking and undermining the people whose opinion is closest to their own, thereby undermining any attempt at opposition to the people at the other end of the spectrum who are supposedly their enemies. It's partly explained by the traditional tactics of the security forces, who have always infiltrated the extremes both to gain intelligence and to undermine the whole movement (for example see how Mark Kennedy acted as agent provocateur and tried to encourage peaceful activists to adopt more violent tactics, thereby convincing them he was genuine and undermining their cause at the same time). Given what's been said in the UK about the security forces watching ME activists and considering them dangerous, it would be surprising if the extremes of the ME activist scene were not infiltrated, but I don't think that can explain the whole phenomenon.

    I personally think there are some genuine issues which can be improved in terms of consultation - this is a new exercise in collaboration for our community and there is always room for improvement - but the way to do that is to get involved constructively. Not to conduct negative campaigns about every flaw you can find in those closest to your own position, but to work with people to point out where there are problems and try to improve things. If you take the negative campaigning route, then it's hopelessly unrealistic to imagine that'll get you a seat at the table and encourage people to consult you more: quite the opposite and that's the root of many of our problems. And it works the same way all the way up and down, by the way - that's life.

    The analogy that keeps buzzing round my mind the last couple of days goes something like this: If I'm driving a bus of people up from London to Glasgow, with a plan to go to Edinburgh when I can arrange it, and I stop to pick up a hitcher who says he desperately, urgently wants to get out of London because he hates it and he wants to go to Edinburgh, and then I tell him I'm going to Glasgow and he's welcome to a free ride, and he then gets really angry with me and says he wants to go to Edinburgh, not Glasgow, and he'd rather stay in London than go to Glasgow, and starts throwing things at the bus...then I'm going to wonder whether this guy really wants to get to Edinburgh, or whether he just wants to complain about not being there.

    I can understand anyone not signing the petition if they don't agree with it, I can understand if they want to set up their own petition calling for the ICC instead (and if they get masses of signatures they could easily prove their point), and I can understand all the concerns about the consultation model, which we do need to develop, but what I can't understand is the apparent belief of some people that 'advocacy' consists of attacking and trying to destroy everything in sight, starting with the people closest to you. My suggestion: accentuate the positive: do your own thing, build your own positive movement, do something constructive and PR will surely support it, and remember the old and very wise saying that it's better to light a candle than to curse the darkness.
  19. snowathlete

    snowathlete

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    I agree. I signed the petition and I did so because I think it takes us forward.

    Why use words when an emoticon will do? :thumbsup:

    :thumbsup:

    Thats a fair point! :D


    A lot of good points. I think its a real challenge and its more obvious here for the reasons you mentioned, than it is for many of the other organizations, and i think thats a strength that PR brings to the group. I also think that what these challenges demonstrates is that a) its an important topic that people want to talk about, so the right sort of thing to major on in advocacy campaigning, and b) although this forum isnt totally representative, it is an open public forum so a lot of the views from the community are expressed here, and so its vital for ALL the orgs who are involved to take particular notice of that because ultimately all these orgs need to have as much public support from the wider community as possible in order to be sucessful in their efforts, and of course to reflect most accurately, the consensus within the community. I'm certain that PR recognizes that, its clear from what you're saying and hopefully the other orgs get it as well.
    In the future, I guess id hope to see people from the other orgs involved here in such discussions because its good practice i think, and as you pointed out, it is a lot of work for one or two people to reply to all the inevitable questions and concerns, and it doesnt very well reflect the fact that it was a concensus decision that was reached, not just you or medfeb, for example. Thanks for doing so much of that this time around, btw (we dont say it often enough)!

    Indeed - people should get involved in the actual core of things if they can, and some people can im sure. Thats how we will get a stronger voice and be more effective as a community. I think weve seen the benefits of that from a number of people in the community who are doing this work already, and I hope it encourages more people to get involved and help out.

    :thumbsup:
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  20. snowathlete

    snowathlete

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    I can relate. What would you pick if you got to pick the name for yourself?
    I mean, let's just pretend for a second that the CDC phone you up tomorrow, after reading this and say, "You know what Firestorm, you're absolutely right! Sorry for dicking around these past decades and treating you all like dirt. We're serious about this now. It's going to be on every news chanel tonight, and we're increasing funding 10 zquillion percent. But, we arent sure what you call it - what do you reccomend?"

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