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Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
Discuss the article on the Forums.

Wolfe Hypothesis ~ Key causative processes involved in CFS/CFIDS/M.E.

Discussion in 'General ME/CFS Discussion' started by John H Wolfe, Sep 13, 2012.

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Does this theory seem plausible?

  1. Yes

    9 vote(s)
    25.0%
  2. Didn't read it

    5 vote(s)
    13.9%
  3. Not sure I fully understand it

    5 vote(s)
    13.9%
  4. No

    17 vote(s)
    47.2%
  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    John H Wolfe

    Mij said:
    You were diagnosed with ME or CFS?​
    Ahhh, that was an either or question, it can't be answered with a yes or no.
    Valentijn likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    John H Wolfe

    You said you couldn't access this link? http://iv.iiarjournals.org/content/27/2/177.full.pdf html

    It works for me--it is the Journal In Vivo, the March/April issue and the reference is:

    Plasmacytoid Dendritic Cells in the Duodenum of Individuals Diagnosed with Myalgic Encephalomyelitis
    Are Uniquely Immunoreactive to Antibodies to Human Endogenous Retroviral Proteins

    KENNY L. DE MEIRLEIR3*, SVETLANA F. KHAIBOULLINA1*, MARC FRÉMONT4, JAN HULSTAERT5, ALBERT A. RIZVANOV6, ANDRÁS PALOTÁS7 and VINCENT C. LOMBARDI1,2

    A simple web search will bring it up a but here is another link: http://www.wpinstitute.org/pdf/invivo27_177-188_2013.pdf
  3. Kina

    Kina Moderation Team Lead

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    Google, Pipl, piecing together information. I have mad skillz in this department.

    Actually, you seem to get angry and annoyed with members when they critique your hypothesis/protocol. Look at your response to me regarding my statement re: 'Real scientists love criticism and questions because it helps them refine, refine, and refine more.'

    If you feel you are being bullied or people are posting personal attacks report these members and I will take off my regular member hat and put on my moderation hat. A problem with the internet is that you don't know peoples intentions, and mostly I see you getting angry and posting these kinds of statements every time a member says something you don't like. It's your subjective opinion whether people are being snide, derogatory or bullying.

    I can assure you that my statement regarding 'real scientists' was not meant to be snide, derogatory or bullying. I happen to know that your educational background is not in the sciences, you claim you are an actor, life coach etc. I consider a 'real scientist' to be a person with an education in the sciences that carries out research using the scientific method in the scientific setting. It doesn't mean that you don't have scientific knowledge or understand science because it's obvious you do. We have many members who don't have an education in science but have great understanding of science and probably have a greater understanding of the science around ME than a regular scientist. I guess I should have said scientist because yes it could be taken the wrong way. I didn't mean 'real' as opposed to 'fake'. I guess my confusion is that you are doing research, developing a hypothesis - a very science-like approach but you don't seem to want to regard many critiques as positive and refine them according to what members are saying to you despite asking for input. I know I would find this thread a lot more positive if you weren't so ready to dismiss members comments. If you came up with a hypothesis that defines the population who you are talking about and dissociated the protocol from the hypothesis/theory, you might get a better reception here. Hopefully, you can take to heart some of the suggestions and try to understand why members are suggesting what they are. We may be a tough audience and there are reasons for that.

    Actually, your responses clearly show that you are expending some angry energy.

    In what way haven't you recovered? Because when I see a person playing tennis rather robustly in a video 11 months ago, I tend to think that this person is recovered and I just can't come to terms that a person with that much energy actually has ME because for me ME must have PENE as the cardinal symptom. And just because I have difficulty reconciling something, doesn't mean that I am suggesting you don't have ME/CFS. I think it would be clearer if you could add some information like, when I was first diagnosed I was at 2 percent of my former self, presently I am at 80 percent etc. Clarity would help us to understand.

    From the ICC:

    Don't get annoyed when people question your diagnosis because you really haven't been clear re: level of functioning, past and present etc. Generally, quite a few people get misdiagnosed with ME/CFS because if doctors can't find a cause for your symptoms, they call it ME/CFS without digging too deep. It's out of ignorance and sheer laziness. They diagnose you and then send you on your way after suggesting anti-depressants, CBT, get some sleep, stop unhealthy habits etc, etc, etc. I would be right happy if somebody said to me I actually think you might have something else -- check this out, check that out. And hopefully, if I checked something out and got a different diagnosis that was more easily treatable, I would be very happy.

    I would be ecstatic if I could apply simple life style changes which progressed into a remission. I have been trying for 16 long years. :cry:

    Many members question if they have been misdiagnosed and there have been quite a few instances where members get re-diagnosed with something else and it's always good that they say so because it leads others into getting things looked in to. And also, it's not a prerequisite to have ME/CFS to explore it's causes and suggest a protocol. It is a prerequisite though, if you are going to make definitive statements that you understand it what ME is as opposed to chronic fatigue.

    I likely have totally mangled what I am trying to say in this post because I am having an extremely bad day. There is no nastiness involved. I am just trying to get some honest thoughts across.

    If you are going to have a theory/hypothesis/protocol aimed at ME/CFS, you need to define ME/CFS or your theory/hypothesis/protocol is applicable to people without ME/CFS. Is your protocol for fatigued people or people with ME? Is your protocol aimed at people with CFS as defined by the Oxford, London, or Fukuda definitions? If you are going to address them as the same thing, then you need to clearly state that and use criteria to back up your statements. If you are going to treat them as separate entities with your hypothesis/protocol aimed at both, then you need to clearly state that and tease out why. If you are going to have a hypothesis that defines the cause of ME/CFS then you need to clearly state who this applies to. If you can't or won't do this, then your hypothesis/protocol won't be very useful to people with ME because it will apply to other conditions. And the worst thing of all, your failure to define who your theory and protocol is aimed at is quite insulting to those with ME/CFS. We are sick to death of being lumped in with people who are tired, burnt-out, stressed out from lifestyle choices. We are sick of people suggesting that better lifestyle choices will lead to a remission. It's a huge mistake to treat ME/CFS as fatigue and then suggest stress relief, attitude changes and nutritional changes will lead to remission. I am pretty sure it's safe to say that some of the members posting on this thread are not happy with your article for the previous reason. The CCC and ICC are an attempt to get away from this kind of thing. So if you use the ICC, then you can conclusively direct your hypothesis at people who fall under this diagnostic category. Your hypothesis would include all those with PENE because PENE is compulsory etc.

    We are trying to help you but I get the feeling you aren't hearing what we are trying to tell you. You may be content with your work so far, but isn't it obvious to you that many are not. If you want your work to be relevant to ME/CFS patients then you need to direct it patients who actually have ME/CFS (I use CFS here to mean ME, not as separate clinical entities -- I can't wait for the day when ME is the only term) or you should stop using ME/CFS or you need to drop the ME and just use CFS because it's apparent that you are addressing these two things as different entities and it does seem most of your protocol is aimed at ameliorating chronic fatigue. I think if you kept your protocol and hypothesis separate that might be better.

    Please note, I am not intending to be rude, derogatory, aggressive, a bully or snide. I mean all of this as constructive criticism, nothing else. :)
    Valentijn and dancer like this.
  4. Valentijn

    Valentijn Activity Level: 3

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    Right. I did some digging into "Wolfe's" recent internet activity. He's been to Bart's and believes ME is a biopsychosocial disorder.

    Maybe he'll learn something from us, but as of four weeks ago this is what his hypothesis and protocol are based upon.
    SOC and Sushi like this.
  5. ukxmrv

    ukxmrv Senior Member

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    It's not my intention to be rude John. You must be getting your information from somewhere? My feeling was that you sounded just like what I was told in the clinics.

    My best help was through aggressive rest therapy (that is resting as much as I could to save the energy for important things) and trying to live within my envelope (and remembering that this could vary from day to day).

    My discovery through the graded activity and exercise programs was that I hit an invisible ceiling and that I couldn't move past that. Attempts to do so resulted in an increase in ME symptoms (particularly the viral one) and a decease in what I was able to achieve each day. So for example, if I went to a clinic and met with a therapist and embarked on a structured program it left me with less physical functioning to be able to bathe and dress myself and cook.

    The extra activity of joining a program meant that the energy expended on this had to come from somewhere. I was starting at a minus as I had to recover from the trip to the hospital first. If the program was at the same time as a flu epidemic and I caught that then it could be months until I was able to even start at the activity that the program used. Even if it was a short walk. If I had to fight a benefits claim then all my energy went into that or if I had to have dental treatment. Once again weeks or months to recover before the agreed activity could be started.

    Adding anything extra to what is already a struggle is a recipe for disaster. If the activity agreed on is something simple like brushing my hair then there will be weeks when this is possible followed by a virus attack that leaves it impossible and so on, like snakes and ladders. The therapist thinks it is a success if I am able to brush my hair for a month and then adds brushing my teeth. Then I get a virus or infection and it's back to zero. Repeat for as many times as you like eventually hitting the ceiling (i.e. the highest ever recorded activity) and the therapist thinks it is a success, then wham, a year in bed again after picking up an infection probably from the hospital.

    Graded exercise programs where the activity was increased or remained at a constant when worse, was also a disaster for the same reasons. The activity part very quickly began to eat into my energy stores for daily living and had to be cut back instead of remaining constant to such an extent I was worse at the end.

    The problem with using the term PACING which we patients used in the 80's is that it has been hijacked by the psych group (i.e. the PACE trial). This is what I have seen over the last few decades. If we patients use a term the psych lobby soon catch on and develop their own spin for the word.
    snowathlete and Valentijn like this.
  6. John H Wolfe

    John H Wolfe Senior Member

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    Given the repugnant way you have behaved you are lucky to get any response at all :)

    Hmm. Perhaps I ought to do more to explain the theoretical basis for the advice in my protocol than simply the included the link to my hypothesis article, which I admit is not the most accessible read (by necessity)

    Like what? Feel free to quote me where I've stated some absolute, objective truth about the illness
  7. John H Wolfe

    John H Wolfe Senior Member

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    Nope, nor does it relate to what you originally said

    Do you have a problem with the fact my GP put a 'CFS' label on my illness in 2004? ;)
  8. John H Wolfe

    John H Wolfe Senior Member

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    I was referred to Bart's about 7 or so years ago yes, was offered a choice of a place on CBT, GET, pacing trials but didn't think any of them held the answer for me (as I always already doing things in accordance with each approach in a sense) so I politely declined their offer of help

    Among other things e.g. neurological/neuroimmune/neuroendocrine it is, in a sense, yes ~ in so much as ME/CFS is, in the eyes of many, rooted in abnormal biological processes and can be (partially) triggered pre-, and aggravated post-, 'onset' by factors associated with systemic stress, in part determined by psychological state (among other sources), which is of course not immune from social factors (us being social animals), nor indeed the illness itself (dysregulation of emotional state). I make these things quite clear in my article/imply them in my protocol

    Biopsychosocial model: biological, psychological and social factors all play a significant role in human functioning in the context of disease or illness; ME/CFS is no different - if we suffer biological, psychological, or social-psychological harm, generally our health suffers, few would argue with that

    Some have of course argued that psychological factors explain a large part of what makes us/keeps us ill, and I am of course not in that camp - not least because I myself, and other patients I have known, have no comorbidity of psychological/psychiatric disorders and our health can fluctuate significantly with psychological state remaining constant

    I did use the terms 'biopsychosocial and neuroimmune disorder' in earlier incarnations but then I realised that it had certain unhelpful (assumed) causal (and hence unwise/unfair somewhat 'political') connitations that were not truly indicative of what I am driving at in either article
  9. Valentijn

    Valentijn Activity Level: 3

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    I want to go into this a bit more, so hopefully John H Wolfe can understand the problem with his underlying premise. From what I can see, he only began taking a serious interest in ME and developing his protocol very recently, and his understanding of the biopsychosocial (BPS) theories is indeed quite superficial.

    So what is BPS? It can sound good at first glance - biological, psychological, and social factors of disease are discussed, and how they can impact all disease. But the reality is that BPS theories limit biological roles to triggering or predisposing factors, and the disease itself is considered psychological, possibly aggravated by social factors such as ME patients being supported emotionally by their friends and family, or financially by their parents and the government.

    In the case of ME, the "bio" of BPS is, at best, it being triggered by a virus. Then the "psycho" kicks in, and we are assumed to freak out as a result of being sick and continue to think we're sick after the virus goes away. Then there's more "psycho" as we engage in behaviors which are presumed to make us sicker, by not pushing our limits. Then there's a bit more "bio" acknowledged in the form of orthostatic intolerance(because ignoring low blood pressure problems would make the BPS school look extraordinarily stupid when any doctor can easily see them), but it is attributed entirely to deconditioning. Then there's a lot more "psycho" in the form of "medically unexplained symptoms", which is their nice way of saying "psychosomatic", and that is how anything that can't be explained by the deconditioning theory is dismissed.

    So basically, the BPS school says that we make ourselves sick due to avoidant behavior based on the false belief that we are ill. The purpose of their version of CBT (not to be confused with normal CBT used to cope with chronic illness), is to stop us from thinking that we're ill and to put an end to our illness behavior. GET is used as the behavioral part of CBT, to supposedly show us that increasing activity won't hurt us - unfortunately, it has caused a lot of harm to many patients, as is discussed in Kindlon's paper posted above.

    So how do we know the BPS school is so utterly wrong?

    First of all, the group of researches and practitioners who form the BPS "school" is very small: a handful of psychologists and psychiatrists in England and the Netherlands. Simon Wessely is often considered to be their poster boy, but Peter White is also a prolific member, and Trudie Chalder and Esther Crawley also publish quite a bit of low-impact crap in the area. In contrast, there are thousands of biomedical papers published around the world which document biological dysfunctions which the BPS theories cannot account for.

    The BPS school ignores this research, does not explain how it fits into a psychological/psychosomatic model, does not offer any proof for its theories, and badly spins weak results. One of the biggest weaknesses of the entire field of psychosomatic theory is that there is absolutely no proof of it - and there never can be. There is better discussion of this elsewhere on the forum (alex3619 is our resident expert) - but basically a psychosomatic theory relies on symptoms being unexplained. Yet a symptom being unexplained does not logically mean that symptom must be psychosomatic. It could biological, yet undiscovered by modern technology. The existence of psychosomatic causation of a symptom is unproven, and essentially unprovable - it makes no sense to cite a lack of known physical causation as the proof of psychosomatic causation, when there is a similar lack of evidence of psychosomatic causation. And if a hypothesis is unprovable, than it is unscientific by definition.

    Here's a couple examples of the huge mistakes which psychosomatic assumptions can make. Multiple Sclerosis (MS) was medically unexplained until a few decades ago, presumed psychosomatic, and patients were treated much the same way ME patients are now. Then MRI scans of the brain showed lesions, and suddenly that perception changed. MS was never psychosomatic, yet an unscientific assumption was made based on the then-current lack of biomedical evidence. Another recent example is stomach ulcers. Once assumed to be caused by stress, they are now known to be caused by a specific bacteria, and can easily be treated with antibiotics.

    The ridiculous thing in the case of BPS theories and ME, is that vast evidence already exists of physiological dysfunction which is not explained by their vague theories of deconditioning and activity avoidance. The ICC primer, for example, has a chart comparing documented objective physiological reactions of ME patients to exertion compared to normal or sedentary controls (pages 9 and 10), sources cited.

    Another thing to know about BPS research is that objective measurements are almost never used. When objective measurements are used to assess the effectiveness of CBT, the show minimal or no improvement, though many BPS studies will not mention this, or will conclude that it proves that actually becoming more active is not needed to "cure fatigue". Questionnaires about symptoms are used to determine primary outcomes instead, and given that CBT consists of patients being told that their symptoms should be ignored or discounted, it is likely that that is reflected in their answers to some extent. Assumptions of mood disorders and mental illness are based upon the use of questionnaires where people are assumed to have a mental disorder if they have certain physical symptoms or behaviors - they'll label pretty much anyone with any multi-system illness as depressed, anxious, and psychosomatic. There is more discussion of these studies and questionnaires elsewhere on the forum.

    Wolfe initially rejected CBT and GET on the basis that he doesn't have the problems that require those interventions - and he was right, but not just for himself. None of us have those problems, which is why a hypothesis and protocol based upon BPS treatments is inapplicable.
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  10. John H Wolfe

    John H Wolfe Senior Member

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    Thanks for your comments, it's so much nicer when people are civil! :)

    Rest is very important aye, I too have found it a good springboard (recovering to 85-90% and 80-85% on two occasions in the past following periods of relatively good/regular rest (2004/5, 2008/9)

    However, part of the reason I don't feel I pushed on through towards 100% in those instances relates to the difference between rest & ad hoc activity, and what I tend to refer to as smart rest & smart activity (or smarter* e.g. the more we understand about the illness and the interplay of rest and activity within that picture)

    At a basic level this means 'nothing new' e.g. managing energy envelope sustainably and without becoming immobile vs. boom and bust or constantly overdoing things or becoming inactive to the extent that the associated lack of mobility has a detrimental impact on health e.g. through not just deconditioning but also, crucially, through diminished nerve mobility and associated enhanced capacity for sensitisation

    This is the reason for Rowe’s research into neurodynamics – he wanted to find out how to help rehabilitate those patients who could only improve to a point and for whom physical reconditioning seemed impossible due to PENE/PEM. So far the evidence suggests that diminished neurodynamics may hold the key. This is partly why I believe ME/CFS relates strongly to peripheral neuropathic pain (signalling) disorder associated with neurodynamic restriction

    I’m sorry to hear that

    I understand that these things can represent a significant energy investment. I do sincerely believe that if a broad, rest/energy restorative supportive protocol like mine is followed carefully it should eventually provide most (perhaps not the most severely affected) with a reasonable springboard for beginning to explore new possibilities, like improving mobility in the particular ways advocated, when their bodies are ready

    It really annoys me that most ME/CFS patients have to fight/appeal claim decisions, the energy/stress inevitably involved is totally unnecessary/immoral!

    Must admit I do tend to avoid hospitals/don’t like GP surgery waiting rooms and have even considered going in with a face mask! (although always seem to forget)

    Clearly not sustainable. I am certainly not a fan of GET being applied willy nilly, although I do believe it brings conveys benefits at the recovery stage (past remission) when implemented sensibly (smoothly/sustainably in conjunction with a dynamic paced approach)

    I see, perhaps I should revise my terminology in this regard then
  11. alex3619

    alex3619 Senior Member

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    My blog on BPS:
    http://forums.phoenixrising.me/inde...e-and-fall-of-the-biopsychosocial-model.1075/
    http://forums.phoenixrising.me/index.php?entries/the-fall-of-the-biopsychosocial-model.1081/
    http://forums.phoenixrising.me/index.php?entries/part-three-what-next.1099/

    My blog on gastrointestinal ulcers and H. pylori:
    http://forums.phoenixrising.me/index.php?entries/here-we-go-round-the-merry-go-round-part-one.1229/
    http://forums.phoenixrising.me/index.php?entries/here-we-go-round-the-merry-go-round-part-two.1230/

    My blog on fallacies in psychosomatic medicine:
    http://forums.phoenixrising.me/index.php?entries/the-witch-the-python-the-siren-and-the-bunny.1149/

    I have a lot more I want to say, but its not the time to say it and takes too much time to write. BPS is badly flawed. Its not a model in any scientific or systems theoretic sense.

    For a good book on the sociological perspective on psychosomatic medicine:
    http://www.amazon.com/Authors-our-own-misfortune-explanations/dp/1479253952

    For a good book on similar issues but with a more ME and medical focus:
    http://www.amazon.com/Charcots-Bad-Idea-Simon-Overton/dp/1409265420

    For a look at the history of the issues in the US after the Incline Village outbreak:
    http://www.amazon.com/dp/051770353X
  12. John H Wolfe

    John H Wolfe Senior Member

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    Apparently not..

    When was this then, omniscient one?

    This conflation is why I chose to revise my terminology (as explained)

    Not quite, I rejected the trials on the basis that I felt I could manage the psychological and activity side of providing the best conditions for recovery myself*
  13. John H Wolfe

    John H Wolfe Senior Member

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    Are you posting in relation to the OP or to something else?

    Just for clarity, my theory/advice is not based on the premise of ME/CFS being BPS as some would understand it, Val has just decided she doesn't like me or my theory, so much so that she has taken it upon herself to attempt to personally discredit me by misrepresenting my conception of the disease pathophysiology by raking up slightly unfortunate use of a term in an earlier version of my protocol article (that I didn't realise carried such connotations in the online community at that time) :thumbsup:
  14. John H Wolfe

    John H Wolfe Senior Member

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    The processes are explored in the article. Some of them are very basic links, some of them incomplete ones, but you should get plenty of clues as to the linkages from having a good read :)

    See Part IV, Section 1)iv for further detail

    I’m neither selling my protocol nor claiming it can heal anyone; I am sharing/seeking feedback on my protocol ideas and claiming that I expect that they will help put many patients in near enough optimal conditions for recovery
  15. John H Wolfe

    John H Wolfe Senior Member

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    Haha, funny guy. My academic background is in Economics, computing and design technology, film making is a hobby :)

    I am not scientifically/medically trained though this is true, like many ME/CFS patient/researchers I have had to learn a lot! (and still have plenty to learn I'm sure)
  16. John H Wolfe

    John H Wolfe Senior Member

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    It's a perfectly legitimate (if not particularly revealing) answer, it means yes (to either), and if you read up you'll gather that, more specifically, I've received both diagnoses in the past

    Sure it can (see above)
  17. alex3619

    alex3619 Senior Member

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    John H Wolfe

    There was commentary about BPS and its issues. I thought it was a good idea to put some material out there. Anything using BPS as an explanation or model is suspect. The whole paradigm is dying, its not really a model, its not really bio-psycho-social, and its not led to any breakthroughs in patient care. Its good to avoid using it, and I note you said you no longer do so.

    However, as I have pointed out many times, the concepts behind the BPS model, if taken out of the hands of psychosomatic medicine, are valid. Its just the application that is flawed. So while most BPS is flawed, I don't think it has to be flawed, it just is with the current use of the concepts.

    Declining GET and CBT from Barts was probably a good move. Yet CBT in its original context, taken away from psychosomatic medicine, might be of benefit to some. Its certainly of interest to me, though not when used in an unproven curative role.

    The issue as to who has ME or who has CFS is a tricky one. So often we don't know. Generally though I think that if someone has grounds for claiming to have ME, and fit one of the definitions, they should use ME as its more specific and CFS is a diagnosis of exclusion. Yet when I was in hospital for nearly two months recently, and mentioned ME, they wrote it down as CFS. That is part of the problem. A CFS diagnosis can be many things involving fatigue, but that includes ME.

    I haven't read the model in this thread in some time. I am not in a position to comment directly without making blatant assumptions and guesses, given my memory, and I would prefer not to do so at this time.
    Valentijn likes this.
  18. John H Wolfe

    John H Wolfe Senior Member

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    That one works, thanks, an interesting read - HERVs, or something similar on the viral side, may well play a role - my article leaves the door open for this, but I do mean to look into this further in the light of what some experts are now saying about a role for HERVs

    Lee et al. (2013) "Recently, indirect evidence for a possible role of retroviral elements in the systemic response to stress signals has been provided by several studies" ~ this would perhaps link HERVs to the neurogenic sensitisation I see as being central to the illness

    If HERVs are involved, I wonder whether there's also a link to amyloidosis, given links made between to prion disease
  19. John H Wolfe

    John H Wolfe Senior Member

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    What term(s) did you use to search?

    I can see why you might think that but there is a difference between registering dismay/disapproval and getting angry/annoyed. I’ve remained calm throughout, if people want to get rude/personal that’s their bad and sad for them, no need to let it effect one’s own emotional state :)

    Firstly, if it troubled me personally I would indeed report it – instead I am merely explaining why I will respond positively/fully in some cases and less positively/fully in others

    Secondly, I suspect that as a moderator you are not supposed to take your moderator hat off e.g. ignore unjustifiably harsh treatment/become impartial at any stage? If moderators only acted when reports of behaviour with the potential to cause harm were made then forums such as this would soon become pretty lawless places..

    You see what you want to see. Get a neutral party to read back and they’ll totally reject that POV. That you’re now attempting to make out that I’m some kind of aggressor is well.. it just makes me chuckle

    Great story, I never said it was

    Sorry, when did I say I was any kind of scientist?
    I am certainly not God’s gift to science but, for the record, I have a guy in my extended family who has a first class honours in biology and by now I know quite a bit more than he does in certain (relevant) areas – qualifications are beneficial/a good marker in some senses, but not a golden ticket to understanding everything related, nor are they necessarily the only route to answering important questions

    I’m sorry but I will never accept unreasonable treatment or harsh rhetoric. You will see from every post that has been made in a civil way that I have engaged with the respondent. Again, I suggest you re-read or ask an impartial 3rd party to confirm this for you

    I’ve provided you with my history of diagnosis, I have neither the time nor the inclination to give you a more detailed history of health – and I’m surprised you haven’t already checked my profile and seen that outside of periodic viral infections (and having salmonella at one point), I’ve only ever been down as low as about 40%

    I’m not annoyed, I’m appalled, it’s in incredibly bad taste

    How many members lie down and tolerate it when, uninvited, other community members pointedly question, deny, or make assertions re: their diagnosis, based on partial information? I’m guessing not many (I hope)

    It’s aimed at people with ME/CFS, which implies something akin to CCC/ICC as I understand it, but like I say, refer to the hypothesis article intro should you require further clarification (I have now included PENE, as per the comments of one of the members who have posted here)
    I’m never 100% content with the work as a whole - constantly developing/refining, hence the desire for ideas, feedback etc
  20. lansbergen

    lansbergen Senior Member

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