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Should Chronic Fatigue Syndrome be expanded to include other fatigue related..?

Discussion in 'Action Alerts and Advocacy' started by Snow Leopard, Jan 3, 2012.

  1. Snow Leopard

    Snow Leopard Senior Member

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    I've been holding back on the debate about disassociating ME from CFS, because I hadn't yet formed a strong opinion.

    But perhaps one of the ways to reduce the stigma is to expand CFS to include the other fatigue related syndromes, eg post-cancer fatigue, MS-fatigue, HIV-AIDS fatigue, Fibromyalgia related fatigue etc. All of these conditions follow the same patterns speculations about the HPA axis, dysfunctions in cytokine and receptor signalling etc, but no major understanding.

    If we agree that CFS is a heterogeneous condition, then it is logical to include all of these related fatigue conditions under the same banner. That way ME won't be the only key subset within the overall banner.

    Your thoughts?

    If this is a good idea, where do we go from here?
  2. kurt

    kurt Senior Member

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    I don't think the name is our biggest problem, and don't think a name change will fix the biggest problem, which is the lack of a singular biomarker for this illness. There are some possibilities of course, such as the dysregulated immune system, especially T and NK white cells. In fact, ME is really just a description of one of many symptoms, I don't think it is a lot better than CFS as a name except that it sounds politically better, more medical. But I want some real answers. Anyway, if for example immune function is going to end up being the major player, then probably CFIDS is better than CFS, but still, I don't think we have enough knowledge yet to even argue about this.

    OK, so thoughts on your proposal, should CFS include other fatigue syndromes? I don't think it should, because that would not solve the major problem, which is finding a primary biomarker, or at least a reliable set of biomarkers, such as we have now for so many other chronic, complicated diseases. Rather, including other fatigue illnesses might further water-down the level of attention to the central problem, which is, to repeat myself, finding a primary biomarker. CFS is still a provisional name and I really don't want to see that replaced with yet another provisional situation.

    I realize many people think the name CFS is the reason we do not get the attention we need. I used to think that as well, but the past few years have changed my thinking. When there was a possible hard biomarker, a retrovirus, did the researchers stumble on the name 'CFS'? Not one bit, they spent millions of their research $$ studying CFS, and they did not care what this disease was called. So the attention we REALLY need, which is from serious researchers, is based on good leads about... you guessed it, a reliable set of biomarkers. When we get the biomarkers, I think we will get the attention and answers will come as researchers find relevance, as they did with the retrovirus hypothesis.

    So where we go from here is not to go crazy about the stupid name CFS, but to try and support ongoing research, particularly well-managed research programs that are conducting well designed studies focused on finding biomarkers.
    heapsreal and Enid like this.
  3. Snow Leopard

    Snow Leopard Senior Member

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    Right now one of the key problem in terms of lack of research is lack of capacity for new scientists to enter the field. Eg, a catch-22. By expanding the umbrella, the field can expand more easily, the leap from cancer-related fatigue syndrome to ME is not as great as other leaps.

    The name is a big issue, because it causes young scientists to underestimate its impact. Specifically illness/syndrome vs disease debate, its association with psychosomatic medicine as well as the pervasive idea that most people with CFS get better within a few years.
    I only came to the conclusion that the name was that bad after I actually started to talk to young scientists in other fields (and lost the argument you are now trying to make).

    Specific biomarkers are a holy grail. There are plenty of diseases with visible lesions that still don't have specific biomarkers, many types of cancer for example. By expanding the field, we will have increased knowledge on the similar patterns between fatiguing diseases and have a better idea of where to look for specific bookmarker. The reality is that it could take hundreds of millions of dollars to find specific biomarkers given the heterogeneity of CFS and even ME. I don't know about you, but I don't want to wait 20 years.

    We need big changes to get people to start to take notice again and this is one of those big changes.
  4. WillowJ

    WillowJ Senior Member

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    The ME-itis name is good because it is the official WHO name (sans the "benign" which ought to be dropped, as everyone who knows anything agrees). It ties in to historical knowledge, and it should be less difficult to say "comply with WHO" than "accept our novel name for this condition".

    studying disease-related fatigue is certainly an interesting concept, and I would be in favor of that (we have very limited treatments for any kind of fatigue, and very limited concepts of what might cause any kind of fatigue, and the cancer folks, Lupus folks, MS folks, etc. could certainly use help with that as well), but I'm not certain whether it could jump-start research of ME/CFS (I think we would continue to be ignored, while other conditions would be studied). I am willing to be convinced of this, but I don't see it.

    I do see the CFS name as a problem because it is trivializing and because people think they know what it means when they do not. However, if we had accepted biomarkers that would resolve, even with a dumb/confusing/stigmatizing name intact, but we will likely not get biomarkers accepted without a definition fix. We also need funding!
    Enid likes this.
  5. WillowJ

    WillowJ Senior Member

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    That's quite true.

    But we still need doctors to know how to diagnose ME (if we like Ramsay-ME) or to have a diagnostic protocol for ME/CFS (if we think there are people who don't fit Ramsay-ME but do have a neuro-immune disease which isn't something else but is currently being diagnosed and studied as CFS and is something like ICC-ME), which would preferably include some sort of biomarkers, even if not actually considered diagnostic for ME/CFS.

    Several diseases are currently diagnosed by a combination of lab and/or imaging tests and clinical presentation, and I see no reason why this couldn't be done for us (presently, even, although it would need to be refined as more information was available, hopefully often).
  6. Snow Leopard

    Snow Leopard Senior Member

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    I agree, this is where we need to move to in terms of diagnosis.

    Diagnosis in other diseases rarely relies on specific biomarkers (because there is none), so it relies on a pattern of abnormal results. Researchers need to formalise the diagnostic tree process, this should be the next step for those that authored the international ME criteria.
    WillowJ likes this.
  7. Nielk

    Nielk

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    As long as there is no real biomarker, it doesn't matter what the illness is called, how can you effectively study a homogenus cohort of patients where the results of the study makes any sense.
    Including other fatiguing illnesses is a big mistake. It's just expanding the waste basket idea of the illness. Besides, our fatigue is not the same as other fatigues. Ours is PEM - so you are not comparing apples with apples.
  8. floydguy

    floydguy Senior Member

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    How do we get bio-markers when we don't know who we are studying? I think the real lesson of the last few years is that you need to have a better defined population otherwise you will never get to agreement on biomarkers. The problem with CFS and "fatigue" is that it so ill-defined that nearly anyone can be dx'd with it. CFS the name itself may not be the problem but it certainly doesn't help properly define a population in order to start down the path of establishing bio-markers. Personally, I think "CFS" should be ditched but only until a criteria is laid out that defines the population on the neuro-immune aspects of the disease. I really don't see how we get anywhere when the CDC and established institutions like the Mayo continue to look at CFS as primarily all about being a little bit tired.
    Ember likes this.
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    1) I agree with the 1st part, but don't you think that perhaps why we haven't recieved much funding is due to the name? Chronic Tired Syndrome?

    2) I would tend to agree with this statement.

    GG
  10. Nielk

    Nielk

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    Yes, I do agree with you that a name change is critical. The name we have been given is equal to someone who has a yawning tick! Of course a "normal appropriate medical name is very important. What I was trying to say is that just changing the name and not changing the criteria is not going to get us there. Actually we need both: a proper biomarker and a proper name:)
  11. alex3619

    alex3619 Senior Member

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    Hi, I take a different view, although ask me any particular month and I may have yet another view- as the evidence and my understanding grows, so does my view.

    I think the name Chronic Fatigue Syndrome is irrevocably tainted. No matter if we fix it now, the entire history of research using this name will create confusion for decades more. I think ME is OK, but even that is temporary. Once we have biomarkers and start to unravel the physiology, a new name will emerge. Furthermore some percentage of us will not have ME, and we need a name for these patients too. Even if you are certain you have ME, there is a chance you don't and have one of the similar conditions: we wont know until the science is done.

    What we could do for a generic term is something similar that highlights the heterogeneity of the term, such as: Chronic Fatigue Spectrum Disorder, CFSD. The point is to make it clear the term is about a spectrum of fatigue related disorders. Subgrouping would not only be desirable but mandatory. At the moment Neuroimmune Disease covers this, but I think the point Snow Leopard is making is that it might be desirable to expand this further, and some fatiguing disorders might not be neuroimmune. I am not sure if this is necessary, but I am fairly decided that I would not want to hang yet another definition on the CFS acronym as it stands. Something must clearly differentiate it from the old acronym.

    I am mindfull that the Light's research comparing ME and MS showed both disorders have an adrenergic receptor dysfunction, though in different receptors. If this kind of research were to be extended to other fatiguing disorders, what might we discover? Furthermore, if we understood the inter-relationships in the biochemistry in these disorders, we might be able to learn from many of them, and research which at first seems irrelevant might become important.

    Bye
    Alex
    WillowJ likes this.
  12. Ember

    Ember Senior Member

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    Exactly. If you want to find something (a biomarker), it helps to be looking in the right place (a homogeneous cohort). Ergo criteria first, biomarker second.

    By definition, CFS research isn't good research. Garbage in, garbage out. It's the bane of all research. ("Pray, Mr. Babbage, if you put into the machine wrong figures, will the right answers come out?") The authors of the ME-ICC stress this point.

    Patient sets that include people who do not have the disease lead to biased research findings, inappropriate treatments and waste scarce research funds.

    Accordingly, 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 patients to be diagnosed and enrolled in research studies internationally under a case definition that is acceptable to physicians and researchers around the world.

    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 aetiology of myalgic encephalomyelitis.
  13. floydguy

    floydguy Senior Member

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    I think one area to look forward to are the genomic and systems biology approach that is being done by several different groups. Hopefully, that will aid in sub-grouping or emptying the basket.

    My case may be a little extreme but it's likely that I will not be in ME basket at the end of the day. From a neuro-immune aspect, I match up pretty much like everyone else but from the exercise side my dysfunction appears to be coming from somewhere else - possibly some kind of auto-immune disease (not Stiff-man but maybe something similar) which affects my ability to breathe properly (oddly my heart lungs appear okay). So my V02 max is low and I basically fail the exercise testing like everyone else but the reason is not from the exercise itself. There is some other unidentified issue which is having an adverse effect on my respiration.

    I would guess that at least 40% will end up having something other than what is ultimately defined as ME.
    kurt likes this.
  14. Ember

    Ember Senior Member

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    How about Metabolic Dysfunction Illness, MDI" (http://www.adbusters.org/magazine/99/zyprexa.html)? Do you think Adbusters could help us with our PR?:D
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    snowleopard, there is already too much (intentionally manufactured) confusion about "CFS" including the name itself. We really need to throw "CFS" right in the garbage right now.

    There is ME, there is Idiopathic Chronic Fatigue and then there are other diseases which have fatigue as a symptom. That's how it was before the Wesselys intentionally tried to mess everything up with wordgames and that's what we need to return to now- those terms are accurate and clear and will lead to us being helped. Playing around with more 'chronic fatigue' naming just distracts us and destroys the accuracy and clarity we need desperately.

    Keep it simple and accurate- there's ME and ICF. Let's throw out "CFS" and any other "CF" names right now!
  16. floydguy

    floydguy Senior Member

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    Yeah, plus it's not helpful for people like me who probably have some other thing going on. I want to be able to focus on the areas of ME research that can help me like the immune dysfunction part of it. I don't see that being done until sub-sets are defined or ME stands on it's own as a very distinct disease entity.

    Empty that basket! Don't fill it up more!! I just don't see how that helps ANYONE - except the shrinks.
    justinreilly likes this.
  17. Snow Leopard

    Snow Leopard Senior Member

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    Floydguy, I see one of the problems to be that researchers will continue to study "CFS" rather than ME until we point out that these CFS definitions (the CDC is still working on a new one that they 'hope' that everyone will use - but in reality it will probably just confuse things more) are necessarily heterogeneous and logically should include those other post-illness fatigue disorders. The international ME definition so far has been the most restrictive so far...

    alex3619 - Some interesting points, thanks!
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    ME might sound better then cfs if in america or australia where cfs is the main name used but in the UK the name ME is frowned upon just as bad as cfs. I agree with Alex and just keep it there until there is more research. We need to persue and push the research alot more.

    We have biomarkers, we just need more people to research it further to consolidate and back up each others biomarkers. Klimas for years now has pushed nk dysfunction, now we have bond uni who have done the same thing, so theres 2 but we need more other researchers to look into this and alot deeper and there will be other markers for sure. Brain scans are another area where abnormalities have been found but they need to research the crap out of it so that it is 99.9% consolidated as being a biomarker and the na sayers wont have much of a leg to stand on when we can produce reems of evidence, even though i think there is enough now, but because of the stigma of this illness we need to go overboard with it to really drive home the message that this is a serious neurological/immune problem that exercise isnt going to fix.

    cheers!!!
  19. Whit

    Whit Senior Member

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    I don't think the name is the problem. I think the problem is the attitude about the illness, which comes mostly from the lack of any medical understanding of the illness. Any illness, no matter what the name, with no real signs of sickness except behavior, would get severely ridiculed, judged and misunderstood by the general population. It wouldn't matter if it was called Pain Death Syndrome. It has happened with similar situations for centuries and will continue to happen. People judge what they don't understand, and CFS is hard to understand, even for people who are closest to us. It has nothing to do with the name. It's more the fact that we don't have huge blisters or sores, or look disgusting, etc and sadly, it's partly because the illness doesn't kill us (though it may shorten lives and cause other problems that do)

    Words build up a meaning and an image that get attached to them, but that attached meaning can be changed, it is shaped by our understanding. If someone named Barrack Hussein Obama can be elected president, we can easily change the feeling and image behind CFS.

    It actually might work better to embrace the name. Us being ashamed of it and trying to run away from it actually might reinforce all the crap judgement.

    Changing the name will just create confusion and waste energy and resources and time. The name CFS has been used for decades now, and is all through our records.

    What we need is a diagnosis based on a physical, medical difference between us and everyone else. Once there's a diagnosis, people will start taking it seriously and it will snowball. Scientists like a good challenge, and they will become interested in it once this happens. We don't even need funding as much as we need this diagnosis.
  20. Snow Leopard

    Snow Leopard Senior Member

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    With regards to the name, it is after talking to young scientists that I discovered how much impact the name actually has. You'd be surprised how many young scientists think no one is studying CFS because it is 'rare' or the idea (myth) that most people recover spontaneously within 3 years.

    Changing the name at the very least creates fresh awareness, which we so badly need.
    WillowJ likes this.

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