1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.

Why ME/CFS is NOT an appropriate name

Discussion in 'General ME/CFS Discussion' started by Sammy1, Jun 20, 2013.

  1. Sammy1

    Sammy1

    Messages:
    26
    Likes:
    12
    Norway
    I don't understand this part, is it name suggestions?
  2. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Don't even bother about it Sammy - this disease known to a select few still requires definition when all is known.
    merylg likes this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,103
    Likes:
    4,349
    australia (brisbane)
    Until we have a biomarker they agree on to use for diagnosis then whatever you call it will get twisted into dam yuppie flu. Aarrgghh!
    WillowJ, merylg and Nielk like this.
  4. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,742
    Likes:
    4,611
    Sth Australia
    Im not against the word "chronic" if there was a new name for this.. it would stop doctors from telling people that they will be better within a couple of years.
    Allyson, merylg and heapsreal like this.
  5. Andrew

    Andrew Senior Member

    Messages:
    1,951
    Likes:
    1,206
    Los Angeles, USA
    In an ideal world, I think the best name is Ramsay Syndrome. But in a real world, the most practical name right now is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome because it unifies the overlapping research and sends a message that there is more to CFS than most people think.
  6. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    667
    Australia, Melbourne
    Oh heck, why don't we just name it after ME?



    A
  7. peggy-sue

    peggy-sue

    Messages:
    2,496
    Likes:
    2,868
    Scotland
    I used to call it WIG.
    (Whatever I've Got.)
    I just want rid of anything to to with the vile and inappropriate word "fatigue".
    Fatigue has nothing to do with not having to abiliity to make enough energy to do something.

    I don't like ME. You get prats such as ricky gervaise prattling on about sufferers all being "me, me me", and calling it a "joke".
  8. alex3619

    alex3619 Senior Member

    Messages:
    6,833
    Likes:
    10,404
    Logan, Queensland, Australia
    Yes, exactly, its not so much the name as what people do with it. ME has been widely considered in the medical profession to be code for crazy for about 43 years now, much longer than CFS which is only at 25 years and counting. Both names are tainted. The word fatigue does command less respect than encephalomyelitis though. The real problem is not so much the name as the babble that some use to try to explain things.
    peggy-sue, SOC, merylg and 2 others like this.
  9. Waverunner

    Waverunner Senior Member

    Messages:
    991
    Likes:
    828
    Diabetes is a very unpleasant illness but the name doesn't sound very horrible, so I agree with Alex. The whole discussion if CFS or ME or XY are the correct terms leads to no-where and this is why this discussion makes no sense. As long as you don't know the cause and as long as you cannot differ between patients, you should leave the name as it is. A doctor once even told me, that this whole name discussion destroys reputation for CFS because people do not focus on the illness but what surrounds it.
  10. Sammy1

    Sammy1

    Messages:
    26
    Likes:
    12
    Norway
    I don't see any harm in discussing if Me is an appropriate name or not. This is after all a ME/CFS forum and the purpose of a forum is to share thoughts and have discussions.

    ME means that our symptoms is caused by an inflammation of the brain and spinal cord, don't you think that's misleading?
  11. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,930
    Likes:
    8,061
    Amersfoort, Netherlands
    I have body-wide inflammation, including my brain and likely my spinal cord as well. Autopsies have also shown similar problems. So I'm not sure why anyone really gives a damn if it's 100% accurate and 100% the best name for it. It works well enough, and it would remarkably stupid to invent a new name and confuse the public in areas where ME is already fairly well-known.

    I think it's a pointless topic to waste time on. Argument for the sake of argument, possibly with a huge dose of unhealthy fixation on a trivial matter.
  12. Forbin

    Forbin Forbin

    Messages:
    226
    Likes:
    193
    In 2005, James Baraniuk et al. published an article in BMC Neurology titled:

    A Chronic Fatigue Syndrome Related Proteome In Human Cerebrospinal Fluid
    http://www.biomedcentral.com/1471-2377/5/22

    On 4/24/2010, noted CFS researcher Anthony Komaroff summarized the findings of that paper before the Massachusetts CFIDS Association, saying:

    “A whole group of proteins, in the brain, were found in 1/3 to 1/2 of patients with Chronic Fatigue Syndrome vs. none of the patients who were healthy - highly significant differences, statistically. And what those molecules - and others that I haven’t shown you for lack of space - say is that there is a low-grade inflammation going on in the brain. There is something in the brain that the immune system doesn’t like, doesn’t want to be there, it wants to get rid of, and that’s being reflected in these proteins in the spinal fluid.”
    Valentijn likes this.
  13. Sammy1

    Sammy1

    Messages:
    26
    Likes:
    12
    Norway
    What about the 1/2 to 2/3 of the patients who didn't have inlammation in the brain, how do you explain that?
  14. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,302
    Likes:
    1,699
    London
    I'm not sure why this matters to you Sammy1. Why ask your question in that way.

    CFS is a diverse population. Personally I wouldn't expect to see the same %. No one is doing research on a strictly ME population any longer so we are left without data.
    Valentijn likes this.
  15. Sammy1

    Sammy1

    Messages:
    26
    Likes:
    12
    Norway
    I'm sorry but I don't understand what you mean, could you please be more clear and specific.
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,103
    Likes:
    4,349
    australia (brisbane)
    the others found with no inflammation could come down to the diagnostic criteria ie they dont have cfs/me but some other illness. The problem with cfs/me diagnostic criteria is that they are far from perfect which is why its important to find a biological marker. If a 1/3 of people diagnosed with cfs/me dont actually have the illness then this explains why many treatments dont have a higher sucess rate. So if a treatment has a 66% success rate then its probably on the money but their criteria for diagnosing cfs/me is not accurate??
    Valentijn and alex3619 like this.
  17. Forbin

    Forbin Forbin

    Messages:
    226
    Likes:
    193
    IMO, when the CDC’s estimate is so vague that it claims that there are between 1 and 4 million cases of CFS in the US, and when many of the top researchers argue that it’s probably less than a million (I’ve heard ~800,000) that suggests that the CDC’s diagnostic criteria may well be producing “false positives,” perhaps as much as 75% of the time.

    Given that, when a study concludes that 50% of patients have certain anomalous proteins in their spinal fluid and 30% of patients have other anomalous proteins in the their spinal fluid – and all of these proteins indicate low-grade encephalitis – the question is not why the percentages so low, but why are they so high.

    The answer could be that the study used a more rigorous selection criteria than that of the CDC, or that “CFS” patients were referred to the study by physicians who used a more rigorous selection criteria than the CDC (although they would all still meet the CDC criteria for "CFS").

    Beyond that, the "low" percentages could indicate that low-grade encephalitis could be an early, transitory or remitting aspect the disease. Patients may not need to be currently experiencing brain inflammation in order to be experiencing its damaging after-effects. It's also possible that low-grade encephalitis may simply be a sign of the disease and not the principal cause of its symptoms.

    In addition, it's also possible that the detection threshold of the test may be too high to catch all positives.

    At any rate, if 50% of your test subjects are growing antlers, the correct response is not “Gee, only 50%... Back to the drawing board.”
    Nielk, peggy-sue, alex3619 and 3 others like this.
  18. Sammy1

    Sammy1

    Messages:
    26
    Likes:
    12
    Norway
    I notice a lot of "could be", "it's probably", "it's possible" and so on. I don't have any problems with speculations, assumption or possible causes but they shouldn't be viewed as conclusive evidence. If you give an illness a name the name should be based on conclusive evidence otherwise there is a great chance that the name is misleading.

    I'm diagnosed with ME/CFS by the Canadian criteria but a spinal tap showed that I don't have inflammation in the brain. My symptoms started in 2007 and I was diagnosed in 2012. If brain inflammation is something that develops later on then it can't possible be the cause.

    As Forbin mentioned, brain inflammation could be a symptom that some ME/CFS patients have. If that's the case then it's wrong to call the illness ME because that would exclude patients who have ME/CFS but don't have that particular symptom.

    I hope you understand that my intentions is not to offend anyone, I'm only trying to come closer the true cause of our illness.
  19. alex3619

    alex3619 Senior Member

    Messages:
    6,833
    Likes:
    10,404
    Logan, Queensland, Australia
    Finding the true cause of ME, and especially ME/CFS is probably impossible. CFS is almost certainly a highly heterogenous condition with potentially hundreds of causes, most of which are misdiagnoses of things already known about. Even ME looks like probably being two separate diseases lumped together, but that is not certain.

    If you want something definitive, here it is: you don't know what is wrong with us. None of us do. That doesn't help us either scientifically (we need more research) or pragmatically (doctors who don't know nearly always jump to a psychogenic or other psychiatric disorder hypothesis).

    Researchers needed to look at epidemic populations at the time of infection and then follow them for many years. Early ME populations had clear and consistent neurological signs.

    While there are inflammatory markers in many patients, my understanding is there are different kinds of inflammation. I would also like to point out that universal testing for such markers does not happen, and we probably don't yet know all the inflammatory markers yet anyway. So all that can be said of a negative test is no markers were found, not that there is definitely no inflammation.

    If anyone wants to get to the causes/s then there is only one way: more research.
    SOC and Valentijn like this.
  20. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,302
    Likes:
    1,699
    London
    Sammy, what investigations did you have right at the onset of your illness? I was so sick with viral symptoms at that time I was unconscious. No one tried a spinal tap. I doubt if many ME or CFS patients with an acute onset ever got to that level of a workup right at the start.

    I'm just not sure why the name bothers you. Unless we have identified the cause of the disease I don't think that having a name that is 100% accurate is possible.

    Not sure what or whom you are referring to about excluding patients from a diagnosis. You were diagnosed using the Canadian criteria so what exactly are you or anyone else being excluded from and why does it matter?

    Other diseases have misleading names - we have given you example. Medicine is like that.

    Many of the old - time ME patients from acute viral onsets and epidemics have never been tested for brain inflammation or spinal inflammation or nervous system inflammation. That didn't stop the old ME doctors from making the diagnosis. A proven brain inflammation was never needed for them to diagnose ME. If there was a 100% accurate test then they would have used it. We still don't have one. The old doctors named the disease as best they could and diagnosed from the clinical presentation, what tests that they had and their judgement.

    You seem to be in the ME vs CFS debate though. It been going on for decades now. I don't think that you are trying to cause offence and none taken. I just simply don't understand your postings and apologise if coming across brusque.

    I don't see you coming close to the true cause of anything. We don't know what causes ME or CFS. Many of us hated the name CFS from the start. ME was an established disease that needs a lot more investigation and research. It's not ideal but I can't see the point of going through all of this again and again.
    Roy S and Valentijn like this.

See more popular forum discussions.

Share This Page