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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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Wessely honoured with a knighthood for his work for GWS and ME

Discussion in 'General ME/CFS News' started by Countrygirl, Dec 29, 2012.

  1. barbc56

    barbc56 Senior Member

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    I think you have hit on something here. The methylattion test comes to mind.Insurers/medical establishments should not pay for these test unless there is some credible evidence that they are valid.

    Barb C.:>)
  2. Valentijn

    Valentijn Activity Level: 3

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    A urine neurotransmitter panel 18 months ago showed low norepinephrine. A blood platelet catecholamine panel six months later also showed even lower norepinephrine. Norepinephrine is involved in regulating blood pressure, and blood pressure dysfunction can cause many OI symptoms.

    Increasing norepinephrine directly (without also increasing dopamine and/or epinephrine) isn't really feasible currently, so trying a norepinephrine reputake inhibitore (NRI) made sense. They are all prescription drugs though. My ND from Seattle was willing to prescribe one (Strattera/atomoxetine) for me, based on those test results and the anecdotal experience of another ME patient, and it worked wonderfully, so we decided it makes sense for me to keep using it.

    Neither of the norepinephrine tests were suggested or paid for by my Dutch insurance. And when a cardiologist referred me to a neurologist to look into getting Strattera prescribed here in the Netherlands, the neurologist assured me that drugs cannot help me, only GET. This was AFTER I showed him my norepinephrine lab results and described the symptoms that the drug was successfully treating. Then he printed out the entire PACE trial to, err, prove his point. :rolleyes:

    Researching the neurologist on the internet showed that he was a big proponent of "medically unexplained symptoms", with the usual view about (not) providing actual medical treatment for patients that have them. It's hard to say whether Simon Wessely's work specifically influenced his attitude, but the BPS and/or psychosomatic schools of thought certainly did. And the result was that he would entirely discount all evidence of a physiological abnormality being successfully treated by something other than an anti-depressant.

    Fortunately my GP seems to believe ME is a physiological issue, not a mental health problem, so she's trying to get me a referral to a neuroendicrinologist. So far she doesn't want to prescribe it herself though, since she isn't a specialist in an area that would involve the use of an NRI. But if that doesn't work out, I can still get it prescribed by my US doctor and emailed to me - just costs a ton that way.

    If your doctor doesn't want to prescribe it for OI, the primary use of Strattera is for ADHD, and it's also commonly used for anxiety. So if you and/or you doctor think you have either of those problems, that might be an alternate way to obtain it. But I definitely advocate testing neurotransmitters first, to see where the actual problem is, especially since different ME patients seem to have different problems.
  3. barbc56

    barbc56 Senior Member

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    The urine neurotransmitter test is not a recognized test. What occurs in the brain is not comparable to the levels of neurotransmitters in the urine or blood. You would need a brain sample to do get an accurate reading however even then it's more of an issue of how efficiently your brain is using what neurotransmitters that are available than the actual level.

    http://www.sciencebasedmedicine.org/index.php/bogus-diagnostic-tests/

    I take Nuvigil which kind of works the same but a bit different as the ADD drugs. Nuvigil is used for narcolepsy. When I take it, it helps me focus, my energy level is closer to "normal" though but it's relative and my energy level is very low. It also decreases my pain probably because it dampens the part of the nervous system that is reactive to stimuli that most people's brains are able to shut out. You have to have a diagnosis of Narcolepsy or excessive daytime sleepiness to get this prescribed.

    It sounds like a neuroendocrinologist is an excellent option. Possibly a neurologist? Let us know how it goes as I'm sure the information would be valuable to many of us. Hopefully!!:)

    Good luck.

    Barb C.:>)
    alex3619 likes this.
  4. alex3619

    alex3619 Senior Member

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    To clarify, none. Or Ramsay. Or .... It depends on what you mean by proof. Ramsay defines a specific outbreak, if I recall correctly, the Royal Free Hospital epidemic. I could be wrong about that though, its been a very long time since I read Ramsay. So its a good definition of at least one outbreak. Most of the others are more general. I should have been more precise when I wrote that. For the most part I think its fair to say none of the definitions are proven. What I was trying to get at though is that more specific definitions should minimize subgroups and would be easier to prove.

    Post viral fatigue syndrome is "proven" too, but typically over-interpreted. People get viruses. People become fatigued after viruses. I don't think anyone would want to dispute that. However when PVFS is equated with ME or CFS, that is unproven. The Dubbo studies and other studies do show however that some cases of PVFS either seem to worsen or are only found in the worst patients, and this can last for a very long time. There is some evidence too that OI occurs in PVFS.

    To really prove a definition though we need to understand the cause (and it can be tested), or at least enough of the pathological mechanisms so that a definition can be validated/tested. In this sense none of them are proven.

    To give an alternative example, I do not think there is any disease known as type 2 diabetes. I think its a syndrome, with common pathways in the variants - which can possible also be interpreted as a spectrum of disease rather than a single disease. So it has common pathological mechanisms, but is it a single disease? I doubt it very much. Yet a small range of diagnostic tests are used to diagnose it. That narrow range of techniques mean we consider it in most cases to be one disease.

    Cancer, the wasting disease, used to be monolithic too. Now however we don't just specify specific types of cancer, in many cases we can differentiate based on underlying genetics etc. The more we can identify subtypes, the better treatments can be designed and tested for those subtypes.

    Proof in science is simply a statement that the evidence is overwhelmingly supporting it and there is either no or no important counter-evidence. Proven things in science get disproved almost regularly. Good science is more about disproof than proof.

    My current dominant hypothetical mechanism for ME, and this changes regularly as the science changes, is: that it is caused by a weakening of the immune system; typically due to a viral or other severe infection; that this results in proliferation of viruses under alternate viral lifecycles especially enteroviruses, but possibly herpes family viruses too; and that secondary complications arise due to long term homeostatic and immunological responses to those persistent viral infections, including vicious cycles. Typically viremia cannot be found, but due to the two additional viral lifecycles that nobody is talking about it is not expected that viremia should be detected. Instead a biopsy is required.

    Bye, Alex
    Bob likes this.
  5. Mark

    Mark Acting CEO

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    Quite a sharp question and worth thinking about. In a situation where you have conspicuously large numbers of people reporting a diverse set of chronic symptoms following the Gulf War, and without a validated starting point for a definition of a condition by the very nature of the situation, and you're tasked with investigating the problem, what would be the first thing you would do?

    I would think most people would start by gathering a mass of data - both subjective and objective - on the symptoms of those affected, with the first, crucial objective being cluster analysis aimed at identifying subgroups. After all, there's clearly a heterogeneous situation here, if you're starting from "everyone with chronic health problems", so your first job is to whittle down and define cohorts who have the same symptomology, bearing in mind that it's quite possible there are several distinct conditions involved (maybe overlapping, maybe in a fairly complex puzzle). You cast your net wide, and gather masses of data, with the aim of subgrouping. Lump in order to split. Well, that's what I'd do first, or is that naive? Only when you have identified groups of people with symptoms in common can you then start to investigate what causes those subgroups may have in common.

    Has any serious attempt at such cluster analysis ever been made? Where's that mass of data, and where are the papers on this effort, for ME/CFS, or for GWI? If we are now, decades on, still at the point where in both cases the approach is still to look at the whole cohort as a massive, heterogeneous blob, is that situation not a devastating indictment on those who've taken principle responsibility for investigating these illnesses?
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  6. alex3619

    alex3619 Senior Member

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    barbc56, many urinary tests are not validated when it comes to many aspects of brain chemistry. I do not know that a brain sample is needed though, for most purposes a spinal fluid sample is sufficient I suspect. However that does not mean that a urinary sample cannot provide a clue. In some cases its better to go with inadequate findings and then test them, than to simply do nothing because better tests are not available. It also means we don't have to subject patients to more invasive and higher risk procedures.

    However that argument is also correct for nearly every medical blood test there is. Blood tests presume that blood levels reflect tissues levels. Specific tissues may be very different. We have known for over a decade that despite normal serum potassium, half of all CFS patients are actually potassium deficient, which is determined by whole body scans (I don't recall the exact technique offhand). The body maintains serum levels, and one of the regulatory functions of the kidneys is to further maintain serum levels.

    So urine reflects tissue levels less the impact of things like the blood brain barrier, less degradation that can occur in travelling from brain to urine, less the homeostatic mechanisms in blood, and less the homeostatic mechanisms in the kidneys. Thats what makes urine only an indicator, and not wholly reliable. Its still data though, and sometimes some data is better than none.

    The other issue raised in the science based medicine article is about potential misuse of the tests and overinflated claims due to financial conflicts of interest. I do not doubt this occurs, but the fact that some do this does not imply all do this. It would have to be investigated test by test, and company by company.

    Bye, Alex
  7. Valentijn

    Valentijn Activity Level: 3

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    I didn't just get the urine tested ... after it came up positive, I tested blood platelets, which shows a longer term (past 3 months) levels. And while norepinephrine does have some effect on the brain, it also does quite a bit outside of the brain - such as affecting blood pressure by increasing vascular tone. "Neurotransmitter" simple means that it's involved in the nervous system, not that it's confined to only affecting the brain.

    Plus I think it's rather naive to discount a test result just because it doesn't necessarily show what's happening in the brain. Should we follow the standard protocol preferred by pharmaceutical companies and make random guesses regarding which drug to try instead?
  8. barbc56

    barbc56 Senior Member

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    Mark, I absolutely agree with you. I would also like to see the data. But until we have that I think it is premature to call it a distinct illness or not. I need to reread the science based medicine article I cited above to refresh my memory.

    Barb C.:>)
  9. barbc56

    barbc56 Senior Member

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    I have no idea about spinal fluid and am now curious if this can show the same levels of neurotransmitters as a brain sample. However, once again if I remember correctly it's not just about the levels. I will try to find some more information about this.

    Barb C.:>)
  10. alex3619

    alex3619 Senior Member

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    Mark, in the past several years there have been some attempts at subgroup clustering for ME. The CDC is currently implying they might do this. I have blogged about this in the past. The Oxford definition of CFS would be valid as a research definition if it were strictly used to purposes of identifying subgroups and so develop more specific definitions. This is not what happens however.

    Such clustering requires large cohorts, numerous tests, many researchers and assistance, and so it requires oodles of money. We typically don't get oodles of money. However the costs of many of these techniques keeps going down. I think that might be a factor in why subgrouping is now seriously being looked at by some. Systems biology approaches are the kind of thing that does this.
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  11. barbc56

    barbc56 Senior Member

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    Yes, however there is one difference. This test is not scientifically validated. This is why patients are not reimbursed or covered for this test.

    Barb C.:>)
  12. alex3619

    alex3619 Senior Member

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    Spinal fluid is almost identical to brain fluid, they are closely connected and only really differ by location I think. To get better results you would need tissue biopsies, but I can't see that being approved for the brain very often. Many tests we have are easier, cheaper or safer versions of tests that would give the most reliable data, and so can be less reliable but have other benefits.

    That difference in location can matter though. Many brain chemicals may be degraded by the time they get to the spinal fluid, it depends on what is being tested. Some hormones have a half life of only seconds for example.
  13. dannybex

    dannybex Senior Member

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    Rich VanK and Dr. Neil Nathan published a study using the methylation panel that showed that 2/3rds of the patients involved improved significantly. But no doubt that isn't 'science-based' enough for some, since it was published in the Townsend Letter for Doctors. Nevertheless, multiple studies published in more so-called 'prestigious' journals have shown genetic abnormalities in patients with ME/CFS compared to controls.

    Anyway, there is credible evidence. Some just choose to ignore it.
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  14. barbc56

    barbc56 Senior Member

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    I would absolutely discount a test that hasn't been validated. Now it may test for exactly what it's suppose to however we don't really know until the test goes through the same processes that other laboratory tests have to undergo.
  15. barbc56

    barbc56 Senior Member

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    You are correct. It isn't scientific enough for me. I would however, be interested in seeing these journal articles. The couple I looked at seemed to be based on a false premise.
  16. Mark

    Mark Acting CEO

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    I guess you're right, Alex, that subgrouping/clustering implies a very large cohort and therefore large expense. But still, that seems to me like the pre-requisite for really getting started properly on anything, and even a series of smaller-scale data-gathering studies according to some protocol that could enable the data to be pooled, would be a good start. Perhaps one of the best prospects here is web-based crowd-sourcing of the problem, but the most promising work I'm aware of is the Open Medicine Institute's massive database they're building; that really does sound like a promising approach, though I don't know how much of the data they're gathering is going to be suited to the subgrouping problem - I hope it will be.

    I agree with that too Barb: in the absence of that data we can't even say, scientifically, what clusters and subgroups and multiple illnesses may exist. My view is that, until we have such evidence, we can't really get started on doing much terribly meaningful science on anything else because the cohorts are always going to be mixed up. So from the point of view of a rigorous attitude to "science based medicine", one might say that we haven't even reached stage 1 with any of these illnesses yet, and in that sense there is no rigorous "science based medicine" at all to go on.

    I think you and I can agree 100% on our understanding of that rigorous attitude. Where I think you and I will tend to begin to differ is that I would then go on to say two things:

    First, that if, decades after the gulf war, and over 50 years after the Royal Free ME outbreak, it is true that there is no really high quality rigorous "science based medicine" evidence whatsoever about any of these illnesses, then rather than saying "oh well medicine and doctors can't do anything then" because science based medicine is the be-all and end-all, what we are all obliged to do instead is to go with the best evidence we do have, and yes it's of much lesser quality due to the cohort definition problem, and it's all subject to a fair degree of critique and uncertainty, but there is still a mass of evidence, from anecdotal reports and the wealth of experience of long-term patients and physicians, through to some good scientific research on good cohorts based on barely-validated definitions, which does suggest quite a bit about the nature of these illnesses. So the best we can all do is muddle through and try to make the best of all that body of evidence, rather than discount it because it isn't up to the best modern standards. Unfortunately, a dogmatic approach to scientific evidence will be likely to pick off every piece of the evidence that we do have and question it to bits until there is nothing there at all, which really gets us nowhere and is logically self-consistent and rational but ends up as a purely destructive activity.

    Second, that if the mainstream or establishment view is simultaneously saying that you can't have any treatment or research or anything, really, in the absence of solid and rigorous "science based medicine", and at the same time no attempt is being made to conduct any such research, over a period of decades, then you have a situation of gross neglect and even abuse of the sick, and you can't really judge the legitimacy of the 'gold standard' that is being set without reference to the fact that the 'gold standard' is by definition impossible to achieve. That gold standard, whether it be "science based medicine" or "evidence based medicine" or whatever, sounds very reasonable and intelligent and rational in its own terms, but if the reality is that no such research exists, or is feasible, for a particular disease, and no serious effort is being made to fund such research, then the 'gold standard' is not the intelligent and rational approach that is appears to be, but merely a bar that is deliberately set at an impossibly high level to jump over in order to prevent anyone from jumping over it. In such a situation, it's quite rational for patients to resort to the best science available, and inevitable that patients will resort to weaker science and even quackery, because it's better to experiment and try something that might have weak evidence than to just give up all hope and wait for the arrival of a solid and rigorous solution that nobody has even started looking for yet.
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  17. Ember

    Ember Senior Member

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    CDC has called the Persian Gulf War "the first documented cluster outbreak of chronic fatigue syndrome:"
    Here's a more recent statement, taken from “Visual event-related potentials as markers of hyperarousal in Gulf War illness: Evidence against a stress-related etiology” (2012):
    See also “Validation of a research case definition of Gulf War illness in the 1991 US military population” (http://www.ncbi.nlm.nih.gov/pubmed/21986258).
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  18. Holmsey

    Holmsey Senior Member

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    Hi Firestormm, no as usual you are on the money. Most of our policies have payment limits on expensive treatments although not cancer as that's the one most worry about, presumably you need to acknowledge that to compete in what is becomming a very competative market.
    We'd quizz around recomendations for cat scans but wouldn't rule them out if necessary and we'll pay out on any exploratory a clinician thinks is necessary regardless of ICD code. If with time we had concerns about the clinicians jundgement we'd approch them seperately for clarification. Yesterday I mentioned product range, ours is quite staggering, we have main products (several hundred), these can then be tailored by plans (more hundreds) then you can add or remove from these using riders (tens).
    My own cover is at the high end as an employee, and we have qualified nurses as case managers, not only have I found that these managers 'beleive' in ME as a physical entity but I've found my company does not limit in any way regards testing / treatment where these are recognised, thus my reference yesterday to the problem being the 'powers that be'.
    Regards critical illness / mortguage protection. We use third party insurers where we include such cover, I've looked into my own CI and have found you pretty much have to have what is considered a terminal illness or permanent disability (of new onset) to stand a chance. That's where again we're let down by the 'powers that be' and the likes of testimony from unsympathetic clinicians.
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  19. Firestormm

    Firestormm Guest

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    I do believe that one of the most confounding dilemma's facing someone with ME (and other condition also) is (as I mentioned previously) obtaining a prognosis that concludes 'this person will be permanently disabled and is unlikely to improve'.

    Such a verdict can be very hard to obtain for a condition like our own. I appreciate that. But not everyone is 'let down' or fails to overcome 'unsympathetic clinician' views. It can be a tough ride but is not insurmountable. And let's face it, ME is not considered permanent or disabling - though we 'old timers' might consider it so.

    I do know a couple of people in my very small social circle - as I mentioned - who have had pay-outs in respect of their mortgages - sufficient to pay them off and enable the purchase of a home for example based on the 'permanence' of their condition. These may be rare instances, I can appreciate that, but they do occur.

    Given the state of evidence and the science surrounding our primary condition I am not really surprised that ME isn't regarded as 'progressive' or 'permanent'. Until such time as those who remain 'severe' for extended periods despite treatment are studied - we may never move beyond what appears to many to be an impasse.

    More needs to be done to support more people. Although if ME was ever to be discovered to be progressive or terminal then the insurers would undoubtedly adjust their risk profiles and premiums accordingly...
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  20. Wildcat

    Wildcat Senior Member

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    Firestormm wrote: "But not everyone is 'let down' or fails to overcome 'unsympathetic clinician' views. It can be a tough ride but is not insurmountable. And let's face it, ME is not considered permanent or disabling - though we 'old timers' might consider it so."

    .

    @ Firestormm: You appear to be ignoring the public evidence of the official and institutional prejudice towards ME Insurance claims, as well as ME Incapacity and ESA claims.



    As for believing (as you have stated) that Disability Living Allowance (DLA) is awarded on care and mobility needs alone, and not refused according to the specific illness. My own (nearly 5 year case) disproves your trusting belief in official proclamations from Westminster, and your trust that 'officialdom' generally 'gets it right'.

    .

    And please don't commiserate with me, and give me advice. After 5 years I ended up more informed about how DLA assessments and Tribunal Appeals, and SS Commissioners' cases actually operate than I suspect you are.




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