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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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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. Wildcat

    Wildcat Senior Member

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    Well put, Valentyjn.
  2. barbc56

    barbc56 Senior Member

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    Let me make this clear. Whatever happened was horrific. We don't know which doctor was to "blame". I'm not sure if we know or will ever know the true story. If true, the symptoms that she reportedly had should never have been overlooked. In this case it may be both doctor's myopia. Whether De Meirlier didn't investigate as he thought every symptom was from ME or if her GP thought this was all in her head, you can't ignore a lump. No doctor should. However, there is something amiss if she had all the mammograms which were normal. Reading or misreading a mammogram has nothing to do with ME.

    Maybe someone could direct us to a translated version of the journal.

    Barb C.:>)

    ETA Do we know what protocols this young lady was following. Was she taking GcMaf (sp?)
  3. Marlène

    Marlène Senior Member

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    She was a very courageous and combative patient who fought like like a lion but was denied treatment again and again. Even when her BMi was under 18 and couldn't eat anymore, she was denied treatment. Her breast was leaking for years, it was inflamed, red, swollen, ... She had fever, lost weight and her condition deteriorated. Doctors admitted afterwards they misinterpreted her mammograms. It was a nurse in hospital who realized what was going on and who finally transferred her to an oncologist. Even three weeks ago she was denied a bed in a hospice to spent her last days in peace. She wasn't ill enough ...
    Wildcat and Valentijn like this.
  4. Hip

    Hip Senior Member

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    Yeah that is very true. External validation does help as well. Global warming, for example, finally has very high external validation these days, and I imagine lots of talented, idealistic researchers are attracted to the climate change field not just because it interests them personally, but also because it is considered important to humanity. Serious people like doing work that is meaningful and important.

    But I do think it is hard to make something like ME/CFS seem exciting sometimes. ME/CFS is undeniably a mental health condition, but one caused by physical pathophysiologies (as we will probably find most mental health conditions are in future); but compared to say the very extreme "on another planet"-type mental symptoms of schizophrenia or autism, the mental symptoms of ME/CFS probably seem rather dull and bland to many researchers.


    One thing I find particularly fascinating in ME/CFS is the overall lowering of consciousness and dulling of awareness (a mental state that we call brain fog or cognitive dysfunction). I studied cognitive science before I got ME/CFS, and I was particularly interested in the nature of of consciousness. It seems to me that a disease like ME/CFS, in which there is a dulling or weakening in the power of consciousness and in the sharpness of mental focus, might be an ideal area of study to further our understanding of the mysterious phenomenon of consciousness.

    I also find it fascinating that language skills are significantly hit. People with ME/CFS often develop "tip-of-the-tongue" word recall problems, grammatical problems, decreased spelling abilities, loss of vocabulary, and so forth. Why is language affected in this way?
  5. Valentijn

    Valentijn Activity Level: 3

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    How is it a mental health condition?

    I have yet to see any convincing research showing that it is, and have read quite a lot of crappy research concluding that having fatigue plus multiple physical symptoms necessarily equates with mental illness.

    So I think it's quite deniable that ME/CFS is a mental health condition.
    Katherine, Purple and Wildcat like this.
  6. adreno

    adreno 3% neanderthal

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    Tundras of Europa
    Yeah, consciousness is the holy grail of cognitive science. I regard consciousness as an emergent property of the physical processes in the brain. Just like an old newspaper photo is made up of small dots. If you remove some of the dots, the picture gets more grainy (brainfog).

    Language is mostly tied to the temporal lobe, I do not know if ME/CFS somehow affects this area harder than others.
  7. Hip

    Hip Senior Member

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    If you have ME/CFS, most of your symptoms are mental ones: that is, symptoms that relate to the functioning of your mind and brain. For example, many people with ME/CFS have significant sound sensitivity, a condition in which the brain is unable to filter out the signal from the noise. Since this symptom occurs in your brain and in your mind, it is a neurological and mental symptom. That is just one example.

    People with ME/CFS also have short-term/working memory deficits, problems recalling words or names, loss of focus and awareness, emotional lability, depression, irritability, anxiety, panic attacks. These are all mental symptoms.
  8. Valentijn

    Valentijn Activity Level: 3

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    I think there is some confusion - many of those symptoms you list might be termed "cognitive" or even "neurological".

    Also, things like depression and anxiety are often attributed to ME patients, but the basis in many cases is questionnaires where physical or cognitive disability will result in questions being answered in a manner that comes up indicating depression or anxiety, even when there is no actual depression or anxiety.

    I'm not saying that ME patients don't have mental health issues, but all of the research I've seen diagnosing the majority of ME patients with mental illnesses is not credible. Hence I disagree that ME is mental health condition - at most it's a medical condition of unknown etiology that might cause mental health conditions in an unknown proportion of sufferers.
    Katherine and Wildcat like this.
  9. Hip

    Hip Senior Member

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    I am rather partial to quantum consciousness theories, particularly those by Hameroff and Penrose, in which they posit that consciousness is a quantum phenomenon that occurs within microtubules. Although I don't pretend to understand this microtubule consciousness theory in anything other than simple, qualitative terms. At one point, I was wondering whether there might be some microtubule damage in ME/CFS, leading to reduced consciousness. Microtubule disintegration is certainly a feature of Alzheimer's. Certain toxins can prevent microtubule polymerization and assembly. But much as I find the microtubule theory of consciousness fascinating, I don't think that microtubule abnormalities are a likely cause for the reduced consciousness (brain fog) of ME/CFS.

    I think the most likely cause for the reduced consciousness of ME/CFS is problems in the reticular activating system (RAS), which controls (switches on and off) waking consciousness. The RAS extends throughout the brain, but its main center is in the brainstem — an area of the brain known to be dysfunctional in ME/CFS. The brainstem is also the area observed to be lesioned by poliovirus infection in the postmortems of polio victims, and I suspect that other enteroviruses such as coxsackievirus B may also be entering the brainstem, and causing lesions in there, leading to RAS dysfunction and thus the reduced consciousness symptoms of ME/CFS.
    adreno likes this.
  10. Hip

    Hip Senior Member

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    I think a there is also the stigma of the mental health label, and we generally like to avoid this label. Though I find that that these days, a lot of effort is being made to reduce the stigma of mental health, especially by well-known celebrities with various mental health problems, who are "coming out" with them for the express purpose of reducing the stigma of mental health issues.

    So to this end, wear my mental health label with pride!

    A while ago, I was suffering from extreme anxiety (generalized anxiety disorder), and extreme anxiety often brings some mild psychosis, which I often experienced. Although now my anxiety and psychosis have more or less gone (due primarily to the supplement and drug regimen I follow), and my main mental problems at present are just the regular ME/CFS brain fog, sound sensitivity, and overall mental exhaustion (I don't get physical PEM, but do get significant mental PEM), I cannot deny that I had quite significant mental symptoms just a few years ago.

    I find it is easier to apply the mental health label to yourself in retrospect, once you are feeling better and are over the worst of it.
    Marco likes this.
  11. adreno

    adreno 3% neanderthal

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    The quantum theory does make some sort of sense. It is highly inexplainable why my phenomenological experience of consciousness is tied to this particular point in space-time. Out of millions of persons who have lived during millions of years, why is my subjective experience of consciousness tied to this person (me) in this time, and for such a short period? How does this alignment come together; how is this particular consciousness and body paired? Seems irrational any way you think about it. The only logical explanation (in an abstract sense) is that consciousness is the same in all persons, all connected (through the quantum field perhaps). That there is only one consciousness, but maybe several reflections of it, similar to different facets of the same diamond. That would somehow be sensible.
  12. barbc56

    barbc56 Senior Member

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    This may be a matter of semantics but I think metal illness is neurological. Unfortunately, the reality is there's still a stigma attached to a mental health diagnosis. As for me it's not being afraid to have a mental illness diagnosis per se that is upsetting but about the misconception that some people believe you can just think your way out of this DD.

    While I also have a diagnoses of depression, it's resolved by medication. Any depression, anxiety I have had after getting sick is mostly a result of the illness and not a cause.

    If I only had to think myself out of this, I would have been cured years ago!!;)

    Barb C.:>)
    Marco likes this.
  13. Marlène

    Marlène Senior Member

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    In the beginning of my illness, I felt extremely sick. The neurological symptoms kicked in later. The emotional lability was the last kind of problem (after many many years) so it is a consequence of chronic illness to me and not a biomarker of ME at all.
    Wildcat likes this.
  14. In Vitro Infidelium

    In Vitro Infidelium Guest

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    It's true that sound a light sensity seem likely to be a problem of brain function rather than impairments of the eyes or ears, although if we allow that M.E/CFS describes a heterogenous syndrome then problems within the eye and ear structure shouldn't be ruled out as having potential relevance in at least some cases. Things become rather more difficult though in the case of muscle and joint pain in the limbs, muscle pain in the torso, neck and face and intestinal pain - all of which are important disabling symptoms for some (many) patients. Dysfunction of the eye muscles are very evident in some patients and motor control of the limbs is problem for many. One can certainly argue for CNS mediation of these symtoms, but physiological changes in muscle, joints and intestine can't be ruled out.
    It helps to have some references for long lists like this, because although the findings may be sound, if they come from disparate sources then the size of study cohorts and author perspective can be significant. Not everyone with M.E/CFS suffers all symptoms reported in all studies and while emotional lability, depression, irritability, anxiety and panic attacks would certainly fall within a 'pschological' ambit, short-term/working memory deficits, problems recalling words or names, loss of focus and awareness may be more appropriately considered as cognitive impairments more commnly considered under a neurologically ambit. Psychological and neurological can be considered false distinctions but that is hardly a settled issue, and again if it is accepted that we may be talking about a heterogenous syndrome, then we have to allow that separate psychologically mediated, and neurologically mediated aetiologies exist - potentially even within individual patients, plus of course 'simple' comorbidities.

    IVI
    Bob, Marco and adreno like this.
  15. Wildcat

    Wildcat Senior Member

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    By all means wear your mental health label with pride, Hip! But please don't suggest that the people who (correctly) state that ME is not a mental health condition are driven to say so by supposed fear of stigma. We are merely stating the WHO ME classification, and research evidence facts that ME is not a mental health disorder.

    .

    A while ago, the UK Minister for Care hijacked a rare ME Debate in the House of Commons and promoted a current government policy to reduce the stigma of mentall illness.....
    the Minister cited ME as an example of avoidance of Mental health label stigma. The urgent ME issues that the Debate was intended to voice were sidelined by that Minister.


    .
  16. Valentijn

    Valentijn Activity Level: 3

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    The theory of the "stigma of mental health" does not prove that ME is a mental health disorder, even if the theory of stigma were true. A study on the subject actually found there was no such stigma among ME patients:
    (my underlining)

    In the same study is a good example of a depression questionnaire. You can see a full copy of it (the Beck Depression Inventory) at http://www.cawt.com/Site/11/Documents/Members/Evaluation/BeckDepressionInventory1.pdf

    Some of the statements many of us would have trouble agreeing with for purely physical or cognitive reasons include:
    This study was better than many others in that "[t]he BDI score was corrected by removing the effect
    of the fatigue variables, tiredness and effort to work. . . ." But unless they removed/disregarded/corrected for 10 out of 21 questions, there's still quite a few points picked up just for having ME symptoms.

    And even with all those questions giving out free points to ME patients, the corrected score was 13.6 for ME patents ... significantly higher than for RA patients (10.9), but close enough to put both essentially in the same category - not of even borderline depression (score 17-20), "but mild mood disturbance". And I think the odds are quite good that if all of the ME-relevant questions were corrected for (instead of just what they call "central" ones of CFS regarding fatigue, tiredness, and effort) we'd be scoring well under 10 and be in the "normal" category.

    If you know of some research regarding ME and depression (or other mental health disorders) which you find persuasive, I'd be happy to read it.
    Bob and Wildcat like this.
  17. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Hip's argument seems to be that neurological and 'mental' is a false distinction, and that argument is not without support in even the neurological camp, not just amongst the BPS model supporters. The WHO classification doesn't resolve this - it's just a classification and has no diagnositic power.

    What research is it that shows "ME is not a mental health disorder" ? Personally I don't believe that M.E/CFS can usefully be described as a "mental health disorder" but proving the negative is a pretty tall order. There are some small scale and unreplicated studies that show neurochemical differences between patients with depression and patients with CFS, but those studies can't conclusively define M.E (or M.E/CFS or CFS/ME or CFS etc) as "not a mental health disorder." Until actual aetiology, or at least a process of resolving symptoms by physical intervention beyond the limit of placebo, is established, it is not a scientifically sustainable position to state unequivocally what M.E is or is not. Not comfortable but unavoidably true.

    IVI
    adreno likes this.
  18. Wildcat

    Wildcat Senior Member

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    .

    The WHO ICD G93 ME classification was decided by the WHO after a number of years consideration of evidence by the WHO

    Like it or not, The WHO ICD 10 is Government Policy, officially accepted by the British government and government departments (DOH, DWP), who should be insisting on its application in UK ME policy.

    .
  19. Jarod

    Jarod Senior Member

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    planet earth
    Mental health label has real world consequences. First of all, 20% of people are treated for mental illness every year in the USA. That probably means the majority of people have been classified as mentally ill at one point or another..

    Mental illness will be used to discredit you if ever involved in a legal battle.

    The mental health diagonosis is currently being used to reduce/prevent one's ability to excercise second ammendment rights for those in the USA.

    Third. It can prevent one from getting proper compensation per disability insurance contract.

    Totally screws up research of course.

    Probably many more reasons they do it.
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  20. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    I SEE THE DEATHS, SUFFERING AND EVEN GOVERNMENT APOLOGIES HAVE BEEN IN VAIN.....
    jeesh!

    Where do you want me to start?

    hard facts, USA/Uk extensively researched non-lethal pathogens during the Cold War. Doctorine was more "destroy economic production" where as Warsaw pact's doctrine was "kill 'em all"

    Bioweapon testing *on the public* was carried out, using "non-lethal agents"...which are lethal when used in such quantities and with so many victims, but "pointing the finger" at specific cases is nearly impossible, as they knew.
    http://en.wikipedia.org/wiki/United_States_biological_weapons_program

    k, and that's just stuff we KNOW about.
    Oh if you want ot get scared by more obvious threats go read up on the Russian's "biopreperat", hey folk are eager to beleieve "the bad guy did bad stuff", we did it too , we were usually more subtle though and with biologicals, that's really scary
    http://en.wikipedia.org/wiki/Biopreparat

    http://en.wikipedia.org/wiki/Unethical_human_experimentation_in_the_United_States
    Go read and wise up, don't dismiss me like that

    UK VX nerve gas and LSD experiments on unwitting military personal
    http://en.wikipedia.org/wiki/Porton_Down#Deaths_attributed_to_Porton_Down

    UK's sick with secrecy, God knows what horrors they got up to that haven't been dug up yet.
    So, when they fear something may "rock the boat", they BURY it.

    Asbestos was known to be dangerous, but we "peons" didn't count, government and industry kept using the stuff, covering up/denying problems, insurance companies trying ot weasel out of paying up.
    IIRC think it was the miner's insurance calims for damage to their lungs ended up with laywers taking 2/3rds of the payout!
    http://www.independent.co.uk/news/u...ng-on-600m-asbestos-compensation-7584590.html

    I could go on and on.
    Wessely and Co are just part of "Business as Usual: sow Fear, Confusion, Doubt, let the survivors die off, deny them from being heard, make them a laughing stock or whatever it takes"
    the political leaders just want problems ot go away, they play "pass the buck" until things are a complete mess

    doesn't mean M.E. was caused by the government in anyway, merely that it's a genuine possibility, and more likey they just wanted it "silenced", as all they care about is the pretence of control, making sure their buddies in Big Business are happy etc.
    My own thought is that M.E. is an autoimmune syndrome, caused by strong immune responses going awary this includes vaccines AND organophosphates because the latter have a violent ability to mess with the immune/hormonal systems that was denied for decades, because we were igesting it from crop sprays...
    But we sitll have to find, if so, what may be the true deeper cause tha triggers the b-Cell "over activiation": viral, random genetics, chemical or what??
    Wildcat likes this.

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