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Dr. Enlander tackles a poor paper "Fear of movement and avoidance behaviour..."

Discussion in 'Latest ME/CFS Research' started by snowathlete, May 31, 2013.

  1. John H Wolfe

    John H Wolfe Senior Member

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    One would hope not (but the inference is extra activity above and beyond what they do just to survive)

    I understand that the article in the OP concerns some of the related themes. Again, hopefully it is not a widespread issue

    Most of the PWME I know are a fairly determined bunch too, aye

    The suggestion is not that PWME avoid activity like exercise because it's somehow convenient for them, it's that some PWME become fearful that activity like exercise will lead to PEM/PENE/relapse and remain (relatively) less active as a result. According to Dr. Rowe, when we remain relatively less active mobility e.g. neural mobility, suffers as a consequence and this may well have a part to play in at least some of our symptoms

    Where this may be viewed as 'inappropriately fearful', and indeed harmful in a somewhat dramatically ironic sense, is where this fear extends to forms of activity like manual physical therapy and mobilisation techniques that improve neuromuscular/neuromechnical tension and hence, ultimately, lead to activity like exercise being better tolerated and aid recovery

    Indeed, which represents something of a conundrum for any rehabilitative strategies

    That's great (so long as that strategy doesn't lead to boom and bust)

    Not consciously or willingly I'm sure, but there is a potential for inadvertently enhancing neurogenic sensitisation (as above), which may lie at the heart, or close to the heart, of our illness

    In and of itself you are right, but combined with good, personally tailored supportive advice/guidance that aims to help ensure it and the right approach, the concept has immense value :)
  2. Richie

    Richie

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    Personally, I must say that fear of PEM has never limited my activity levels. I did CBT and the questions related to fear of activity meant absolutely nothing to me.
    In my case any underactivity has been related to anergic-ahedonic depression which I suffered from for a discreet period of several years, but beginning many years after Ifirst felt unwell.
    Remaining low activity has been based purely on physical tiredness, and in better times interspersed with periods of normal activity, which, however leads either to immediate neuromuscular symptoms or delayed fatigue.
    Shell likes this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    John H Wolfe

    I believe Dr. De Meirleir thinks that much of the inflammatory process arises from the immune system responding to pathogens. If you read the article I linked for you a few days ago, you can read more.


    Sushi
    ahimsa, Xandoff, SOC and 2 others like this.
  4. WillowJ

    WillowJ Senior Member

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    theoretically there could be one or two such people in the world, but it's not a significant factor and has no place in a model of ME/CFS. There is no evidence that this is some kind of subset of PWME.
    Shell, Valentijn and SOC like this.
  5. WillowJ

    WillowJ Senior Member

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    It's better to assume that people are making sensible decisions and try to figure out what is going on with them, rather then fret about why they are not being sensible. I don't think it is justifiable to decide other's people's behaviour or attitudes are "deemed less/un- justified" this case.

    we don't agree on this point. I said not to bother about any fear/concern itself, which will resolve on own as condition improves (or might be misunderstood anyway). You are assuming there is a significant percentage of people who have maladaptive fears, while I think there is not.

    I avoid staircases. This is reasonable because I get worse if I use staircases. It does not prevent me from using them if absolutely necessary, but it does route me to the elevator if available (which is adaptive, as it saves my energy for more necessary things), and I avoid certain places. However I monitor what I am able to do continuously (being this limited is not cool). If I become able to use staircases, I will know.

    there are many illnesses in the world which are not fully understood. Cancer, multiple sclerosis, Lupus, Rheumatoid Arthritis, Ehlers-Danlos Syndrome, motor neurone disease, Alzheimer's, need I go on?

    However there are some things we do have pretty good indications about in ME/CFS. Things that relate to PER: Muscle power is reduced with use and it doesn't return at a normal rate. Cardiopulmonary function drops after exertion (possibly due to an immune reaction similar to the one causing joint pain in Ehlers-Danlos Syndrome). There could be bioenergenic muscle abnormalities in both skeletal and smooth muscle.

    Please read:
    http://www.ncbi.nlm.nih.gov/pubmed/21615807
    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
    http://www.cfids.org/cfidslink/2010/pem-series.asp


    ME/CFS is not less disabling than other conditions like multiple sclerosis and heart failure.

    see: http://www.ncbi.nlm.nih.gov/pubmed/8873490
    http://www.co-cure.org/schopflocher/AISH2B.htm (40-60 on SF-36 may represent the moderate/mild population able to get to the doctor)

    I am not sure how the point about activity changes supports your view. It is well-known that ME/CFS is often relapsing/ remitting. Even with the few who are overall improvers or getting progressively worse, it's probably still a fluctuating course.

    This tends instead to support our view: PWME do more when they can do more.

    In context, I was talking about where people (with any disease) are relapsing due to activity, so there is no "unless" part here. It is dangerous. That is all.

    You have recovered to some extent and I do not know if you fully appreciate that many people are having relapses/PER just from trying to do very basic activities of daily living like eating/ basic easy meal prep (and for some just eating what others make for them), moving from bed to a chair (for some just sitting up or less), washing, toileting, and so forth.

    If people weren't having relapses, they wouldn't be having concerns about what they could do. Thus, no need to correct their thinking. People are very unlikely to be stopping themselves from doing something that won't be giving payback, but much more likely to be trying to do more than they should. It's far more likely that people will need advice on pacing.


    (John's bolding, Willow's underlining)

    since you agree to that, you should have no problem accepting that there is no need for therapy for this appropriate concern/fear about activity which is causing relapses/PEM.
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  6. Shell

    Shell Senior Member

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    Willow and others have made the points I would make here. I am only going to add one thing from my nursing experience.
    I worked in psychiatric acute, occasionally ICU and for a long time in rehab. I did a special work placement with rape survivors and so on.
    One of the key tools we used for assessment was an ADL check. If patients could perform all basic activities of daily living unaided then we could move onto the next level of ADLs such as posting letters, going to the shops, budgeting, calling the gas man etc.
    Once they could do all of that we discharged them with follow up - not for ADL assessment follow up but for whatever illness they had. So a person with schizophrenia would see a community nurse for injections and check up. The signs that a patient was getting sick again would usually be a reduction in ADL competency.

    For those with ME, either they/we are too sick to manage ADLs or we can just about get ADLs done but not the extras, or a person is in remission and not requiring help.
  7. Firestormm

    Firestormm Guest

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    Sorry Shell, the answer is probably on the thread somewhere but am slowing down - what's an ADL?

    Thanks :) Good comment btw :thumbsup:
  8. Valentijn

    Valentijn Activity Level: 3

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    I think it's "Activities of Daily Living"
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  9. Valentijn

    Valentijn Activity Level: 3

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    But there's also no evidence showing that your belief is correct, or that there is a way out if we take exactly the right supplements, think exactly the right thoughts, and do exactly the right activities, all at exactly the right time. As has been pointed out, ME fluctuates by its very nature, and some of the best minds doing hands-on research have not been able to determine why.

    It seems extremely presumptuous to take an unsubstantiated and very abstract theory and say it will somehow work in the real world. ME/CFS patients have tried every combination of supplements and therapies imaginable. Some help a bit in alleviating symptoms, but none are a cure. Hence it seems unlikely that your beliefs about these therapies somehow helping us heal could possibly be correct.

    As a contrast to your beliefs, there is rigorous research which has been done into PEM. Basically there is hard science showing that exertion really screws us up. Based on that research, more researchers did additional research and examined the original information to hypothesize that we get a lot less screwed up if we keep our heart rate under a certain boundary. And many patients say that keeping their heart rate under that level (as an aid to pacing) has been helpful - not in recovery, but in minimizing PEM and associated symptom exacerbation.

    Trying to mash together biological scientific papers with unsupported psychological or behavioral cures is always going to end up as a mess - there are published papers with the same problem. You end up with a logical disconnect, where the recommended therapy has no basis in the scientific evidence. You cannot blindly accept that activity or therapies will in any manner improve or cure ME patients - you absolutely must closely scrutinize the therapeutic research, in which case you will see that the disconnect between the scientific findings and the proposed treatments is the result of very dishonest and sloppy research involving those therapies.

    You're making the same mistake that the BPS school has been making for decades - they start with the presumption that their therapies will work, then bend over backwards to try to explain how biological findings support their therapies. The results are often absurd - such as suggesting that depression causes swollen lymph nodes, or subjective fatigue is more important than objective functioning, or that PEM symptoms are explained by DOMS and deconditioning.

    If you want get sensible results, without being able to conduct research studies yourself, the more logical approach is to start at the beginning - with the biological findings - and work from there. Working backwards from an unsupported belief in a certain therapy is doomed to failure.

    And at the end of the day, activity increases have no place in any treatment protocol for ME patients, barring a major and extremely unlikely scientific breakthrough. Either we are too vulnerable to PEM to tolerate an increase in activity, or we naturally increase activity on our own as we are able. To encourage any activity increase in light of the current scientific knowledge is both reckless and unethical.
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  10. Richie

    Richie

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    Hi Valelentijn
    You say
    "ME/CFS patients have tried every combination of supplements and therapies imaginable. Some help a bit in alleviating symptoms, but none are a cure".

    Is this true? There are testimonials from e.g. Gupta "graduates", followers of that Serbian S African antioxidant guy,glutacyan takers, Mickell men and women, Myhill patients etc., who claim to have got better from an ME consistent condition after a given treatment.

    Post hoc is not prompter hoc, of course but it may be. Very often patients will say "They can't have had real ME". This may be true or untrue, but while we are stuck with diagnosis by criteria, it is a perilous statement, as noone (or very few) among us kniows whether we have real ME, either, or one of many ME consistent conditions. (unless we make a feature of our illness e.g. "we don't recover" into a touchstone, in which case we issue an open invitation to those who parody and deny our condition).

    Some say about such "cures" that "this is anecdote not data" but this argument, is problematic when we don't know what we are really dealing with. Good data can only come from well defined groups or attention to single well defined symptoms, so anecdote is for now imo worthy of our attention.

    Personally I believe some things help some ME consistent patients to recovery, while I admit we don't know whether/to what degree they share common underlying pathology with other ME patients, which then opens the debate as to whether or to what degree ME patients have common underlying pathologies.
    John H Wolfe likes this.
  11. Firestormm

    Firestormm Guest

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    Personally, I believe that some things - including doing or taking nothing but simply learning to cope - allow people to better manage their disability. For some this can and does feel like a remission or indeed a recovery. What is not known because nobody has ever done any research on it - is what 'recovery' and 'remission' actually mean.

    Until such time as we better understand what is wrong with us - as a group and individually - it's a 'suck it and see for yourself' doctrine. That means we can easily fall prey to snakeoil salesmen in whatever guise they choose. It also means that even the most well intentioned medical professionals can get it wrong or right: it really is a hit and miss situation that can also depend on the size of your wallet and your gullibility or indeed the strength of your belief.

    I don't know. At the end of 14 years common sense I like to think still prevails: patients know best. I don't like generalisations as a rule but we have been interfered with enough. Time to get some answers from all this money we've been donating to research. Time for the experts to put their own money where there mouths are.

    Time for me to have a rest I think :)
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  12. Valentijn

    Valentijn Activity Level: 3

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    These are problematic for the same reason that CBT/GET is problematic: there's no clear definition of ME (with PEM) being used in most cases, and there's no objective indication that they are cured. As Firestormm mentioned above, some researchers and patients (especially when first improving) will equate any improvement with a remission or full recovery.

    I think there are a few keystones in any potential therapy: one is that the therapy has a rational and scientific method of action. Another is that the therapy should make sense in light of what is known about the biological mechanisms of ME. And finally there should be objective evidence of recovery from ME using that therapy.

    I think any theory with at least one of those keystones is worth investigating. And any theory with at least two of them would certainly be worth trying. But for most of these miracle therapies (I'm excluding Myhill as I don't think she's selling a cure) the scientific rationality is weak, they make no sense in relation to the biological research, and there is 0 objective evidence of recovery.

    It does seem that there are many things we can do to alleviate ME symptoms - but until it's scientifically proven otherwise, there's no way I'm going to believe that changing emotions or thoughts is going to effect the abnormal levels of proteins following exertion.
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  13. John H Wolfe

    John H Wolfe Senior Member

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    Hmm. I don't recall you providing any links/information to compliment your commentary, did I miss something?
  14. John H Wolfe

    John H Wolfe Senior Member

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    Well that's a relief, if true. I find this statement a little worrying however:


    "The review revealed that fear of movement and avoidance behaviour toward physical activity is highly prevalent in both the CFS and FM population" ~ although I suppose it depends specifically which types of 'physical activity' they 'avoid' and to what extent

    I wonder, has anyone had the chance to see the full text of the article (in the OP)?

    I would have agreed, before I came across Dr. Rowe's current working hypothesis/latest research. To him it seems like a good idea to approach unlocking the neurogenic side of the illness * from all angles; this is why he notes optional use of CBT as supportive measure, presumably to help encourage relaxed/positive attitudes conducive to enabling nerve mobilisation protocols, such as the one he is developing, to be entered into and committed to 'in the right spirit' as it were


    To better understand why it is that certain patients demonstrate "avoidance behaviour" would be to vitally aid such supportive measures e.g. CBT can only be effective if it targets something (in the context of this thread, one of the things might be "fear of movement")

    Hence to me it seems that it is both unwise to assume anything either way and, if you subscribe to Rowe's working hypothesis, irresponsible for relevant researchers/medical authorities to think of analysing what the barriers to improved mobility might be as (needless/fruitless) 'fretting'

    * In affected patients, granted we may not all be affected by this thematic and I don't think he's advocating pushing people into nerve mobilisation (or supportive bits and bobs) if they don't demonstrate signs of restricted neurodynamics e.g. a reaction to relevant test procedures

    It's a tricky tightrope to walk:


    On the one hand, anyone approaching advice/treatment with a patient (who has the problem Rowe outlines) needs to demonstrate empathy and should avoid any hint of 'blame' in so much as is possible

    On the other hand, in cases where "avoidance behaviour" is an issue to the extent that it prevents the implementation of techniques that improve mobility, and lead to a reduced risk of PEM/PENE and better prospects for rehabilitation and recovery, there will clearly be a need to convince the patient that their avoidance is not, strictly, in their best interests (and by extension that any avoidance 'spilling over' from negative past experiences is, unfortunately, not completely rational e.g. rational in a narrow sense, but irrational in a broad sense, or rational in principal bit disproportionate in practice

    Clearly the terminology should be approached as sensitively as possibly but the M.O. in the above scenario should be that the dispenser of advice/treatment must convince the patient to give it a good chance and not to be 'too fearful'. I know this is not uncontroversial given the policies and proclamations of certain authorities re: GET/PACE etc but I wouldn't put any of this as resolutely, or in the terms I have, if I didn't think there was mileage in it for many of us

    You're right, I am assuming that the findings of that study, and my own personal experience with a couple of other ME/CFS communities, indicate there is a significant percentage


    I could of course be mistaken, and I wouldn't be so bold as to assert just how significant a percentage, but for me, if even one person exists out there, who sees this thread, reads my comments, entertains Rowe's principals, and benefits from them, then I will consider it worthwhile and a blessing :)

    Don't even talk to me about stair cases!- I nearly passed out this morning on my way to an appointment for autonomics testing (rather ironically)


    Good shout; I get the sense that many PWME become expert in listening to/connecting with their bodies over time (some of us learn faster than others - it's taken me many years to even begin to get a handle on what mine is telling me!)


    I need to look into this, and Julia Newton's work, in more detail - but hopefully PWME will find that there are a number of supportive (e.g. nutritional [inc. mitochondrial functional], lymph dilution, ishemia) aspects that aid in rebuilding/rebalancing in this area. This is why I firmly believe an integrative approach is key


    Now we're talking


    Thanks, I'll have a look


    Absolutely, for me coloured by day to day variability in 'systemic stress' (in the context of energy production/delivery/storage/recovery deficiencies/vulnerabilities ~ that may be part innate, part epigenetic [where neurogenic sensitisation comes in, I believe])


    I’m glad you’ve used this language – certain other users seemed to (mistakenly) assume that just because I’m relatively fresh on the PR scene I have had negligable exposure to the ME/CFS community at large


    I am aware of this yes, which unfortunately only underscores the significance of my points re: tackling avoidance e.g. someone who reacts badly to doing the basics has all the more reason to assume they will react badly to nerve mobilisation techniques, and that it will do them more harm than good long term

    In the most severely affected I don’t know how appropriate nerve mobilisation would be. If I knew someone who was in that position and sought my advice I imagine I would encourage them to look at the rest of my protocol and ‘see how things go’ before even thinking about approaching the physical aspects of it

    This would be in the hope that they would gradually improve to the point at which their mobility, and choices concerning movement, improved demonstrably – without outside intervention; only at that point would I advocate testing for neurodynamic restriction and associated ill effects

    This is the sense I get too, it’s human nature


    I agree that there is no need for therapy to convince people that doing things that lead to significant PENE/relapses is somehow good for them. Unfortunately some PEM/PENE is likely to arise from the pursuit of a nerve mobilisation strategy – at least from initial test procedures (Rowe has toned down his advice to focus on indirect, as opposed to direct, methods, to help avoid PENE responses as treatment proceeds)
  15. John H Wolfe

    John H Wolfe Senior Member

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    The evidence-base is limited/imperfect but does exist and, as Richie cogently explained, such sources are to many of us one of the best things we've got to go on at this moment in time

    Which is why I congratulate Dr. Rowe for attempting to get to grips, in a 'hands-on way' (his on-going study), with one potential way in which fluctuations associated with exertion may arise :)

    I do not disagree, however all I'm saying is that it is likely to bring benefits for those who demonstrate neurodynamic restirctions and associated neurogenic sensitisation effects arising from neuromechanical challenge. This may extend to a significant number of PWME, given the coincidence of hypermobile/connective tissue/dorsal defects in evidence among our population, then again it may not

    It's important to acknowledge the possibility of autocorrelation e.g. in my own case, I am from a sporting background, so stretches etc that would aid nerve mobilisation have accompanied recovery after major relapses (theoretically inadvertently supporting further recovery and furthered exercise tolerance), along with a host of supportive elements in other areas (including nutrition e.g. gluten avoidance)

    Fortunately nothing I suggest or advocate runs contrary to this principal

    Absolutely

    I believe Rowe's work arose from observations first, theorisation second. Granted there is then a certain leap of faith in order to get a theory put into a study and further refined in practice, but if we didn't sometimes make such leaps there would be no such thing as science at all

    I do not disagree in principal. However I do believe that there are a host of ways in which we can make such 'natural' increases come about all the more swiftly and, more importantly, smoothly :)

    Were I aware of substantive scientific evidence to support the notion that careful but fairly continuous efforts to bring about normal nerve mobility were necessarily harmful I would be inclined to agree. Instead I genuinely feel it would be morally reprehensible of me not to share Rowe's principals and my theoretical, and (carefully considered/delicately approached) practical, extensions to them
  16. Kina

    Kina Moderation Team Lead

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    Isn't this thread supposed to be about Dr Enlander's response to a stupid research paper.

    I haven't read the actual paper because it's pay-walled but the abstract throws up all sorts of red flags for me.


    I am not sure why they are lumping in CFS and FM together here.

    I would love to know how they operationalized 'fear'.

    It's a psychiatric term related to emotion.

    We feel fear in the presence of an impending danger. Whether real or imagined it comes down to the feeling or condition of being afraid.

    Generally, 'fear' and illness can indeed go together.

    Let's see:

    A person with the flu may avoid eating because they are fearful they might vomit.
    A person receiving chemotherapy, may not eat prior to a treatment because they are fearful they might vomit.
    A person with coeliac disease may be fearful of the content of some foods and actually go out of their way to avoid certain foods.
    A person with diabetes may avoid eating sugary things because they fear going into a diabetic coma.
    A person with Parkinson's may avoid some activities related to the fear of falling.

    Do any of these people have to face the following psychobabbling crap"

    Imagine this in a oncology journal:

    Using the word 'fear' in relationship to ME tends to put the patient into the realm that their illness is being maintained due to emotional problems with the hope that CBT will cure these emotional problems, thus curing the disease. It boggles my mind that some people think this is even an answer especially when there are no studies to show that ME patients are fearful and avoiding.
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  17. Valentijn

    Valentijn Activity Level: 3

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    Because BPSers often believe that all diseases featuring "medically unexplained symptoms" are the same disease: psychosomatization. At best they distinguish on the matter of severity based on the number of symptoms: more symptoms = more psychosomatic.
    There was some Dutch research in the area which equated stair-climbing reluctance with fear. And, of course, the most reluctant climbed the slowest, demonstrating to the researchers' (idiotic) satisfaction that our physical performance is the result of our fear. There was no disabled control group (such as MS patients), of course. The present study is probably based on assertions from that study, and/or similar ones.
    Ahhh, but maybe a few cancer patients have a fear of movement in addition to their cancer, and they need CBT/GET to help them recover more! Oh wait, that still sounds ridiculous :p
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  18. Valentijn

    Valentijn Activity Level: 3

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    Where? All evidence supporting cognitive and activity based therapies is purely subjective, and the objective evidence indicates those therapies are completely ineffective.
    So why design a therapy for a group of people who probably don't exist? You're putting the cart before the horse - designing a therapy and hoping there's someone out there (not yet found in any studies, etc) who needs that therapy.
    And as far as I can see based on the citations you've provided, his work has not progressed beyond hypotheses in the areas which you think support your beliefs. If he's done any studies showing his suggestions to be effective, I have not seen them.
    Your theories and the ones that are the subject of this discussion go far beyond "nerve mobility" and into the arena of encouraging increased activity for ME patients. There is no indication that such medical advice is helpful to anyone, and plenty of indication that it is harmful for many, if not most, ME patients.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    John H Wolfe said:

    Re: Dr. De Meileir, inflammation, etc.: http://iv.iiarjournals.org/content/27/2/177.full
  20. Shell

    Shell Senior Member

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    Lumping CFS and FMS together shows they haven't read the dx criteria for either. They also don't seem to see that "fear" of movement in FMS is to do with massive pain flares while in CFS with PEM (ie ME) that PEM/PENE is the usual outcome.Do they acknowledge a subgroup of us with dual dx? I bet not as Valentijn is right about the "all the same" belief.

    Even though they admit that the results of movement can be ugly they then go on to think it's the "fear" that needs tackling rather than the ugly outcome.
    I can't take people seriously who make it so obvious they don't know the diseases they are writing about.

    (The psychi lobby have their claws everywhere. I've just read two papers on IST. One that was excellent and thorough and another that tried to suggest the tacky was somehow related to "hostile personality type". ...after that I felt...well..hostile:mad:)
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