The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Is myalgic encephalomyelitis/encephalopathy an inappropriate name?

Discussion in 'General ME/CFS Discussion' started by leokitten, Jul 3, 2015.

  1. leokitten

    leokitten Senior Member

    Messages:
    580
    Likes:
    1,876
    Maryland
    We all know that "chronic fatigue syndrome" is an absolutely terrible, meaningless, and derogatory disease name that serves no purpose.

    But I am going to throw out the idea for discussion that knowing what we know today maybe "myalgic encephalomyelitis" or even the ME Association's preferred term "myalgic encephalopathy" are both not appropriate names for this disease?

    EDIT:
    Myalgic encephalomyelitis means "inflammation of brain and spinal cord with muscle pain"
    Myalgic encephalopathy means "disease of the brain with muscle pain"

    Yes over the many years there have been tons of publications and very small non-reproducible studies flaunting various theories around this and trying to string together symptoms with known phenomena but honestly most of it is just garbage that isn't backed up by any reliable evidence. And something has to be said for the pile of clinical evidence of all the PWME in the world getting all kinds of treatments based on these theories yet very few people ever recovering from this illness.

    Even though some treatments have helped people greatly, we all know and feel in our bodies that they are not attacking the root cause of this disease.

    You don't have to tell me, I've read the good quality (yet small and not replicated) studies showing neuroinflammation and cerebral atrophy in ME/CFS, and it is likely that this is occurring and that some of our symptoms appear to be a consequence of this. But there are just as many if not more symptoms that don't appear to have anything to do with our brain or CNS.

    There are many diseases that produce neuroinflammation and cerebral atrophy as an secondary mechanism/effect to the primary pathology, e.g. due to peripheral immune activation, autoimmunity, and/or dysregulation of cerebral blood flow and perfusion. But these diseases are not named for their secondary effects, they are named for their primary pathology or root cause.

    Even the IOM process, which was the largest literature review and analysis of ME/CFS in history, determined that there is little or no robust evidence that the root cause of this disease is neurological. And they are absolutely correct, there is little or no evidence that ME/CFS is at its root a neurological disease.

    But there is an ever growing body of evidence from Fluge and Mella showing that most people with ME/CFS seem to have a type of autoimmune disease that appears to be mediated by B-cells and the antibodies they produce. Fluge and Mella have also stated they are skeptical of the general belief that this is a neurological disease, from their clinical experience and pilot studies it seems that whatever autoimmune process is happening that it is causing chronic inadequate fine-tuned autoregulation of blood flow to meet the demands of tissues and this is what causes most of our symptoms and downstream problems, including they believe any neurological effects.

    And the evidence from Norway I believe is much stronger and more scientifically sound then any of the other research touting ME/CFS as a putative neurological disease.

    Remember rituximab does not cross the blood-brain barrier (BBB) at all and therefore has no direct effects on the brain. It could only ever achieve therapeutic concentrations in the brain if there was significant BBB disruption and this is not the case with most of us. In fact in many B-cell driven brain/CNS cancers where rituximab would be effective the drug must be given intrathecally, IV administration will do nothing.

    It could be that peripheral immune activation and/or autoimmunity is directly causing neuroinflammation via a neuroimmune pathway (so not due to disturbance in blood flow regulation) and that rituximab by silencing peripheral immune dysfunction causes symptom relief because neuroinflammation is reduced. But there is growing evidence that this might not be the case. Fluge/Mella have been using potent vasodilators that work on the NO-sGC-cGMP pathway and found that symptoms are immediately and greatly improved with these drugs, so this would refute that hypothesis.

    As a first stab I would venture to say "autoimmune systemic ischemia" might be a more appropriate name than "myalgic encephalomyelitis"?
     
    Last edited: Jul 4, 2015
    MeSci, Sean, rosie26 and 6 others like this.
  2. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

    Messages:
    1,166
    Likes:
    4,253
    Agree wholeheartedly..To be honest i would be content with a name that doesnt try to cover all symptoms.. But ive gathered that this is the trend in medicine. Maybe SAEID? (systemic autoimmune exertion intolerance disease)
     
    catly and leokitten like this.
  3. Nielk

    Nielk

    Messages:
    6,845
    Likes:
    10,458
    Myalgic Encephalomyelitis is the original historical name. To date, there is no unequivocal proof that this is NOT a neuroimmune disease. Some patients are helped with Rituximab. Some feel better with antivirals. Patients see much improvement with Ampligen.

    There is evidence of inflammation, neurological and immune dysfunction as well as muscle weakness and pain.

    There is currently no evidence to CHANGE the original name.
     
    MeSci, heapsreal, minkeygirl and 4 others like this.
  4. AaroninOregon

    AaroninOregon noob

    Messages:
    169
    Likes:
    118
    Hippietown
    Muscle pain is far from the worst of MY symptoms...SEID or as Marky90 proposed SAEID are both closer to what's going on.

    Unfortunately, this disease seems to far more complex than 2, 3, 4 or 5 letters.
     
    Valentijn, Marky90 and leokitten like this.
  5. leokitten

    leokitten Senior Member

    Messages:
    580
    Likes:
    1,876
    Maryland
    The question I'm asking is whether myalgic encephalomyelitis is an appropriate and accurate name given the current body of evidence and knowledge. I am very skeptical of this.

    There are many "neuroimmune" diseases/disorders, it's a very broad and vague term, and yes this disease could fall into that broad category though it doesn't mean ME is an appropriate name.

    The loose equivalence you make to the efficacy of rituximab vs antivirals vs ampligen is just not founded in the evidence. The Ampligen and Valcyte trials didn't even come close to what is currently being seen in the rituximab trials.
     
    duncan likes this.
  6. halcyon

    halcyon Senior Member

    Messages:
    2,269
    Likes:
    5,313
    Keep in mind that the IOM report is discussing what they believe are two distinct diseases, ME and CFS:
    They were not satisfied that they could rename CFS to ME based on the available evidence because they didn't feel that they were the same diseases:

    Unfortunately, even though they made these bold, necessary statements, they were not consistent with the distinction throughout the document, so in the end everyone was left wondering what disease they were actually making recommendations about.

    I don't think that we're anywhere near close enough to being able to make statements about etiology and recommendations about naming based on the work of the Norwegians yet.
     
  7. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,220
    Likes:
    16,010
    Sean, Sidereal, Never Give Up and 3 others like this.
  8. leokitten

    leokitten Senior Member

    Messages:
    580
    Likes:
    1,876
    Maryland
    But Dr. Shepherd is there really any robust evidence that this is a disease of the brain? I know that Fluge and Mella have stated that they are not convinced that it is.

    There are many diseases that cause muscle pain as well as neurological symptoms, it's too vague to use it to name this disease.
     
    Last edited: Jul 3, 2015
    Blue likes this.
  9. duncan

    duncan Senior Member

    Messages:
    2,022
    Likes:
    4,449
    Neurocognitive dysfunction has been evidenced (through cognitive testing) over the years in ME/CFS, certainly suggesting brain involvement.

    Couple that with reports of atrophy or lesions or hypoperfusion, and you have pretty good data suggesting the brain is implicated, or at the very least, impacted.
     
    leokitten likes this.
  10. Nielk

    Nielk

    Messages:
    6,845
    Likes:
    10,458
    @leokitten - do you believe that the disease you have is one and the same as the one presented at the Outbreak in London which Dr. Ramsay studied?
     
    leokitten likes this.
  11. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,220
    Likes:
    16,010
    I would have to say a very definite YES - that this is a disease INVOLVING THE BRAIN/CENTRAL NERVOUS SYSTEM - because there is sound evidence of:

    1 Autonomic nervous system dysfunction +/- POTS
    2 Neuroendrocrine dysfunction affecting the hypothalamus and hypothalamic pituitary axis
    3 Hypoperfusion = blood flow to parts of the brain
    4 Cognitive dysfunction
    5 Low level neuroinflammation and other significant neuroimaging abnormalities

    However, as a member of the UK post mortem research group, which has probably looked at more tissue amples from post mortem cases than any other research group, we have not yet found evidence that is consistent with an encephalomyelitis

    Hence my preference for M encephalopathy - which is consistent with published pathology and means we can keep the E in ME!
     
  12. leokitten

    leokitten Senior Member

    Messages:
    580
    Likes:
    1,876
    Maryland
    Yes I definitely do if what you mean is described here http://www.cfids-me.org/ramsay86.html. I'm trying in this thread to raise the question that maybe calling it "disease of the brain causing muscle pain" is not the most precise/accurate/appropriate, there are many diseases that cause muscle pain and neurological symptoms.
     
    Last edited: Jul 3, 2015
  13. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,876
    Likes:
    5,287
    Scotland
    A small point but there's no implication in the name 'myalgic encephalopathy that the encephalopathy is causing the muscle pain. Myalgic is an adjective. The muscle pain is merely associated with the encephalopathy.
     
    duncan, Sidereal, catly and 1 other person like this.
  14. leokitten

    leokitten Senior Member

    Messages:
    580
    Likes:
    1,876
    Maryland
    Yes this makes sense, apologies I had mistakenly thought encephalopathy meant disease originating in the brain, i.e. root cause in the brain. But encephalopathy really means more widespread brain dysfunction that can be caused by many different things.

    Thank you for the clarification.
     
    Sean, Wayne, Never Give Up and 4 others like this.
  15. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

    Messages:
    1,166
    Likes:
    4,253
    The brain is probably dysfunctional because of the immune system, at least the Haukeland-findings suggest so. Isnt it then a little weird to name the disease, so that it indicates for the layman, that the disease process originates from the nervous system (admittedly that could still be the case in some way). I would add that there is no point IMO changing the name before the research has come further with regards to the autoimmunity thesis..

    EdiT: Okey sry i read the post over now, and agree with that. I still think "myalgic" should be removed though, as not everybody has pain issues (me included).
     
    duncan, Wayne and leokitten like this.
  16. halcyon

    halcyon Senior Member

    Messages:
    2,269
    Likes:
    5,313
    What about John Richardson's autopsies that showed inflammatory injury of cerebral capillaries?
     
  17. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,220
    Likes:
    16,010
    Whilst you could say that there is some evidence for an autoimmune component to some cases of ME/CFS there isn't sufficient evidence to classify it as an autoimmune diseases.
     
  18. leokitten

    leokitten Senior Member

    Messages:
    580
    Likes:
    1,876
    Maryland
    I agree I don't believe we should be changing any names just yet :) but it's good to have a lively discussion and to sometimes challenge deep held beliefs.

    Encephalopathy is still a very broad term and hopefully we will make new discoveries to be able to give this disease a more accurate name.

    Taking into account @Scarecrow's and @charles shepherd 's comments then myalgic encephalopathy would mean in layman's terms "disease causing brain dysfunction and muscle pain" . This is a very, very vague name indeed!
     
    Last edited: Jul 3, 2015
    Marky90 likes this.
  19. Nielk

    Nielk

    Messages:
    6,845
    Likes:
    10,458
    I think that the discussion to CHANGE the original name for this disease is premature. We would need definitive provable findings that negate muscle weakness and neurological inflamation before embarking on a change.
     
    duncan, Marky90 and leokitten like this.
  20. halcyon

    halcyon Senior Member

    Messages:
    2,269
    Likes:
    5,313
    Obviously these findings would be consistent with 'encephalopathy', but aren't they more specifically consistent with 'encephalomyelitis'?
     
    duncan likes this.

See more popular forum discussions.

Share This Page