1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

Exercise does not help Depression, CBT/GET for ME is *DEAD!*

Discussion in 'Other Health News and Research' started by SilverbladeTE, Jun 6, 2012.

  1. Bob

    Bob

    Messages:
    8,528
    Likes:
    11,376
    South of England
    Silverblade, I was feeling guilty about having a rant and going off-topic, but now I feel better after reading your posts. :)
    Apologies for getting you started! ;)
    It's all about risk, and potential for disaster, isn't it.
    I don't think the potential benefits outweigh the seriousness of the potential risks.

    Apologies everyone for going way off-topic! I'll shut up about GM now.

    Is there a subforum for GM on this forum? o_O
     
  2. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,141
    Likes:
    1,712
    Somewhere near Glasgow, Scotland
    Bob
    start up a topic in COMMUNITY perhaps ? :)
     
  3. biophile

    biophile Places I'd rather be.

    Messages:
    1,388
    Likes:
    4,638
    White is also on record for being concerned that the attempts of medicine in general to help patients improve health and reduce disability, is traveling up a "blind alley" with the biomedical model. Wanting to explore and acknowledge legitimate psychosocial factors is one thing, but claiming biomedical science is heading up a blind alley is quite another, especially when he is hypocritically heading others up a blind alley with influential but unfounded speculations about ME/CFS.

    http://www.nejm.org/doi/full/10.1056/NEJMbkrev39005
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1199645
     
  4. Sean

    Sean Senior Member

    Messages:
    1,264
    Likes:
    2,110
    Don't agree that they are "technically correct" at all. They clearly think ME/CFS is a primarily mental/behavioural problem. Always have. That is one thing they simply cannot deny.
     
  5. alex3619

    alex3619 Senior Member

    Messages:
    7,430
    Likes:
    11,845
    Logan, Queensland, Australia
    In reply to SilverbladeTE, post 17:

    I think GM foods have a place, but I think large almost-monopolistic companies with low accountability are dangerous. Just look at the last several years in the financial sector, and the unfolding crisis in Europe.

    If Monsanto, or any other company, controls your food supply, and your population grows in response and is dependent on it - what is the implication for national sovereignty? What happens if you say NO to Monsanto or the USA government?

    If there is another oil crisis (and "if" is not a good term, its more "when") or some similar problem that interrupts shipping, what happens to the seeds going to Africa, or South America, or Asia? Do they just not plant for a year? How many hundreds of millions will starve? Will they be so angry as to start a war (funnelling much of their remaining food to the military)? Could this be how WW3 starts?

    What happens if Monsanto collapses due to unforseen problems? How many years will it be before we can restore the food supply? Billions could starve if enough of the world is dependent on GM crops and the right measures are not taken to contain the crisis. Those measures - who will pay for them? If the US government has to pay trillions to bail out such companies to avert a crisis, and succeeds, guess who will pay for it? US citizens?

    What will happen to the world economy while this goes on?

    There are lots of risks here. Business as usual is better described as Unusual Risk as Usual.

    We have forgotten risk management in an obsessive need for profit and growth. Multinationals are beyond the control of national governments, largely because nobody in government is capable of really doing good analysis - its all too big and complex and analysis requires funding and infrastructure. The UN can't do it either - its an underfunded dinosaur not really living in the 21st century. Its like watching a trainwreck in slow motion - endless fascinating and we are just waiting for the sound of the crash.

    A science fiction writer called Vernor Vinge has written a series of novels in a future in which civilizations keep collapsing all around the galaxy. They get very sophisticated. They get very complex. They keep pushing and use ever-more sophisticated methods to erode the safety margins on everything, secure in their technology. Everything becomes very dependent on everything else. Then something goes very very wrong. It only has to happen once in such a civilization, and the entire infrastructure crumbles in a domino effect.

    The recent years of financial crises are an example of that domino effect.

    To repeat my opening point though, I think GM foods do have a place, they should not be rejected on principle, but we do need to be very careful.

    Bye, Alex
     
  6. alex3619

    alex3619 Senior Member

    Messages:
    7,430
    Likes:
    11,845
    Logan, Queensland, Australia
    Hi Oceanblue, post-exercise issues have a range of factors, as does the fitness question. I recall research here in Australia in the 90s that looked at deconditioning and found no evidence. We are not deconditioned - though to be fair most research is based on mild to moderate patients, not severe or very severe. So we do not know how much deconditioning exists in very severe patients, and its likely there will be substantive deconditioning.

    The Light's research and Pacific Labs research has to be put in perspective on this research.

    Here is White's claim:

    "Exercise or activity programmes are the archetypical BPS interventions. This was shown to us in our trial when we used graded exercise therapy in chronic fatigue sydrome. [reference 3] We showed that if we improved exercise capacity or performance, there was a closely associated reduction in sub-maximal cardiovascular response to exercise. In other words, there was a physical change - they became fitter." Biopshychosocial Medicine, p. 128-9 (bolded bit my addition, just a "3" in the original)

    Ref 3: Fulcher KY, White PD. Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. BMJ 1997; 314: 1647-52. http://www.ncbi.nlm.nih.gov/pubmed/9180065

    You might find this 1982 research interesting: http://users.sa.chariot.net.au/~posture/ChronicFatigueSyndrome.html
    Please note that it is not clear this is about CFS as opposed to CF. They describe it as neurasthenia.

    Then this by Scroop: http://www.ncbi.nlm.nih.gov/pubmed/11782647 Please note that Pacific Labs has similar findings - its the repeat test that is critical. The lack of typical deconditioning markers discredits deconditioning, except of course as I have said before with severe or very severe patients.

    See also: http://www.ncbi.nlm.nih.gov/pubmed/11528333

    http://www.cfids-cab.org/cfs-inform/Exercise/jammes.etal05.pdf
    This one is interesting and detailed. I haven't yet read all of it.

    Most of the papers I have read over the years I only dimly recall - there are many more. Maybe we could compile a list of all relevant papers with links to abstracts (or full papers if available)?

    Bye, Alex

    PS More of the inside Scroop :rolleyes: : http://www.ahmf.org/01access/01sergeant.html
    http://www.ncbi.nlm.nih.gov/pubmed/11782647

    Please note that, I think, a recent UK initiative is again looking at lactate, brain fog moment I do not currently recall the details.
     
  7. Don Quichotte

    Don Quichotte Don Quichotte

    Messages:
    97
    Likes:
    190
    Doctors are just people and reflect in their behavior the beliefs and thoughts of the society they live in.
    They should have been leaders and help shape this society, but unfortunately as a group they are not.
    They basically adjust quite successfully to the norms of the society they live in.

    In the modern western society, normal sadness and normal emotional responses to life events have become pathological processes for which treatment and cure are sought.
    Numerous people who once sought (and received) the help and support of the community during their hard times, are sent by their surrounding community to seek " treatment".

    The diagnosis of " depression" has sky rocketed to unbelievable levels. It has almost become the norm for every person to have at least one episode of depression during his/her lifetime.
    People with " depression" are a mixture of anything from a young healthy woman who had one spontaneous abortion to people with a severe physical illness that is currently unexplained (by their treating physician or medicine in general).

    I have seen patients with leukemia, lymphoma, rare adverse responses to commonly used medications, with " depression". I have seen patients who were lonely and just wanted some human compassion, someone to see them as people and not medical letters and test results. I have seen people who went through significant hardships and obviously weren't constantly jolly about their life circumstances. And I have also seen people who just have a more melancholic personality. I have also seen a rare few who had true major depression which required medical interventions.

    Psychiatry has become so popular and gained so much force in our society, because it is a very convenient waste-basket into which we can throw almost everything. It conveniently solves all the problems from the inevitable limitations of science and medicine to social alienation. It would have been very nice if a bit of exercise could have solved all those problems.
     
    natasa778 and alex3619 like this.
  8. Don Quichotte

    Don Quichotte Don Quichotte

    Messages:
    97
    Likes:
    190
    I fully agree with that.

    Gene therapy (in humans) has been put aside for many years due to deleterious (and unanticipated) results.
    Yet, similar approaches in plants are seen as completely safe.

     
  9. biophile

    biophile Places I'd rather be.

    Messages:
    1,388
    Likes:
    4,638

    Let me clarify. These CBT/GET proponents usually do believe that ME/CFS is a primarily mental/behavioural problem that can be substantially reversed or even cured with the help of CBT/GET. However, they do not (publicly) claim it is a classic psychiatric disorder like MDD which is characterized as a disorder of mood and motivation and anhedonia by its very nature of how it is experience by patients. Of course, MDD is heterogeneous too and involves physical symptoms too and is not purely mental either, but with CFS there is a greater emphasis on "functional" physical symptoms as what characterizes/defines CFS.

    They view CFS as a functional somatic syndrome to sound neutral. Their assumption of no significant pathology and their sole emphasis on mental/behavioural factors as perpetuating factors turns this into a classic psycho>somatic disorder, but they tend to avoid the term "psychosomatic" and prefer layers of euphemisms. When biopsychosocialist proponents are managing either CFS and MDD in practice, there may be little or no major difference between all these concepts, apart from specific strategies, but both involve psychotherapy, exercise, antidepressants, etc

    It is important to remember the subtle conceptual differences during arguments because patients/advocates are often shut down or dismissed by skeptics for claiming that CBT/GET proponents like Wessely et al view CFS as a mental disorder. The response will usually be "you have misinterpreted them, they do not view CFS as a mental illness, Wessely even stated so, they view it as medically unexplained and fairly explore the cognitive/behavioural aspects of illness". There are often allusions that such patients/advocates don't understand the psyche-soma connection, hold outdated views about mind-body dualism, stigmatize mental illness by dismissing it as less important or even "imaginary" and/or want to avoid the label of such diagnoses, etc.

    This is why I said "technically correct", although there is no escaping the fact that they view CFS as primarily a mental/behavioural problem which perpetuates the delayed recovery from functional non-pathological physical symptoms that were triggered by transitory ordinary virus or a bout of psychosocial stress. Their appearance of scientific caution by occasional use of words like "may" is superficial, it is very obvious which way they lean when they keep drawing parallels with mental health problems and the historical debate with neurasthenia etc.

    However, not only have patients been routinely chastised for supposedly misinterpreting the words of biopsychosocialists, patients are even chastised for suggesting that CBT/GET proponents view cognitive behavioural factors as primary in CFS, which is ridiculous because it is demonstrably correct. This sometimes occurs in comment sections of news articles and has also occurred on Bad Science forums where some patients were even insulted for quoting such evidence without claiming it means proponents view CFS as a "pure" mental disorder.

    White personally likes saying that CFS is neither mental or physical but is both, although he does not accept CFS as both a psychiatric disorder and biomedical disease, what he means is that it involves both mental and physical triggers and symptoms (although there is no doubt he privileges the mind over the body).
     
    oceanblue and Sean like this.
  10. alex3619

    alex3619 Senior Member

    Messages:
    7,430
    Likes:
    11,845
    Logan, Queensland, Australia
    Most of those involved in CBT/GET research for Oxford CFS have said things identifying with a variety of positions. In one place its clearly "all mental" and another they imply the importance of the physical. They are often vague and use terms with easily misunderstood meaning. I strongly suspect they tell each audience what they want that audience to hear - so different audiences hear different things, fight between each other, and ignore the real problem - these people are hard to pin down. If they get pinned down they get disproved. If they keep it waffly then they can always find an out.

    So we have to disprove the things they are clear about. From their own research CBT/GET is highly ineffective at best in treating their own prefered patient cohort. At worst, as we know from objective studies and patient surveys, its actually harmful. Furthermore they repeatedly make unsubstantiated statements - track the references they used to support their claims and you find they often don't support their claims. I can forgive a patient for making these mistakes - so many of us moderate or severe brain fog and a history of being abused by people who believe in psychobabble - but its not easy to forgive a researcher for repeated and blatant misrepresentations. That is what we have to focus on.

    Supporting the good science and debunking the bad science should, in my opinion, be the primary goals of advocacy.

    I keep coming back to one other important consideration though - these people are not just researchers, they are medical practitioners. They have to abide by both research ethics and medical ethics. I am almost certain we can get them on medical ethics grounds but its going to take a lot of work. Unsubstantiated allegations are quite rightly ignore by anyone in authority.

    Bye, Alex
     
    biophile likes this.
  11. user9876

    user9876 Senior Member

    Messages:
    770
    Likes:
    1,863
    I really struggle with this its both type of statement. It seems to lack a clear mechanism and is aimed at avoiding making statements about mechanism. I'm amazed at the lack of formality in the arguments they make in papers this allows them to gloss over points they don't want to discuss. I did think it would be interesting to formalise one of their fss papers and show the flaws and gaps in their reasoning.
     
    alex3619 and biophile like this.
  12. oceanblue

    oceanblue Senior Member

    Messages:
    1,174
    Likes:
    343
    UK
    Good point. I haven't read the full text so can't comment onthe strength of the criticisms, other than:
    which sounds familiar - relying on self-reports of activity to measure compliancefrom a group that have agreed to exercise more is not exactly robust. That said, it would have been very interesting to have some measure of activity compliance from PACE GET/CBT participants, even if it was self-report rather than actometers (which are themselves imperfect measures of activity infree-living humans).
     
    biophile likes this.
  13. Sean

    Sean Senior Member

    Messages:
    1,264
    Likes:
    2,110
    No real problem with what you say there, Biophile. (Thanks for the considered response, and Alex too.)

    I have said before that people like Wessely are very good at leaving little get out of jail free cards in their various comments/statements, but which do not actually reflect their true beliefs or intentions.

    Any fair assessment of the totality of their comments will be unable to avoid the conclusion that they view it as primarily a mental health problem, and have been considerably less than frank about that.

    My view is that they have very deliberately, systematically, inappropriately, and unfortunately very successfully, inculcated the mental illness meme among both the profession and the wider community, while (in general) not having the honesty to actually own it fully, and face the consequences. All to our serious cost, as you know.

    A propaganda tour de force, if ever their was.
     
    biophile likes this.
  14. oceanblue

    oceanblue Senior Member

    Messages:
    1,174
    Likes:
    343
    UK
    Thanks for digging out so much information, though I'm not sure it's at all clear that 'we are not deconditioned'. whether or not any such deconditioning plays a material role in our illness is another matter.

    Certainly there is mixed evidence on the levels of deconditioning in ambulatory CFS patients and I will post more on this when I've read more. However, very often the claims about deconditioning made by either the publishing authors or reviewers don't evenmatch the data in the papers. That's why I'm so interested in this area: I'd like to know where we really are on deconditioning and as yet I don't think it's clear.

    The Pacific Labs evidence is on maximal exertion studies which showed, IIRC, decreased performance on the second test 24 hours after the first. So this doesn't relate to GET-like exercise programmes which are always sub-maximal,and doesn't yield any information on the effect of exercise on deconditioning. Also, in their 2011 study, they had a very odd selection of 'CFS' patients: 25% reported no ill-effects following 2 maximal exertion tests in 24 hours.

    The most interesting thing about the Light's study, for me, was the evidence for PEM after a sub-maximal test compared with no PEM in MS patients (or sedentary controls) taking the same test. Again this says nothing about the effect of exercise on deconditioning, and without going back to the paper I think there was evidence of deconditioning in the CFS patients (though some of these were severely affected).

    Ref 3 Fulcher & White is next on my list and I'll post an analysis when I'm done.

    The 1982 study looks like it was unpublished and as you say it wasn't clear what type of patients were invloved, so I'll give it a miss.

    The Sergant & Scroop study (n=33) is some of the best evidence against deconditioning I've seen, but conflicts with other studies. I'm hoping to work out why! Nb their conclusions:
    The Inbar study (http://www.ncbi.nlm.nih.gov/pubmed/11528333) was very small (n=15)and the results weren't clear cut either way.

    Thanks for pointing out the Jammes study - I will read it, but with n=15 it needs to be seen in the context of much larger studies eg Fulcher (n=66) de Lorenzo (n=273)and De Becker (n>400).

    I'm planning to write something more comprehensive when I've read more, but so far the situation seemspretty typical of CFS research in general: a lack of consistent findings.
     
  15. Desdinova

    Desdinova Senior Member

    Messages:
    275
    Likes:
    132
    USA
    Unfortunately they psycho-babblers will still press on and simply say they aren't using GET to treat depression but the deconditioning that developed because of our somatic disorder. As for the study over all I'm not surprised I've often wondered / felt that the improvement most depressed people saw as a result from exercise might have been in helping relieve stress and or anxiety. Hence while helping with the intensity of their depression it doesn't relieve it.

    What those of the biopsychosocial movement will either fail to understand or disregard is that almost everyone will agree that it is important for one to keep moving and active via physical activity (exercise or otherwise) in life. Especially if one is ill as much as they possibly can without causing physical harm.

    But this brings us back again full circle to the great divide between our two camps. And will remain so until PEM can be better understood and substantiated with accepted tests beyond any dismissive argument the biopsychosocialist may come up with.
     
    PhoenixDown likes this.
  16. alex3619

    alex3619 Senior Member

    Messages:
    7,430
    Likes:
    11,845
    Logan, Queensland, Australia
    Hi Desnidova, I think we have shown results that clearly show PEM - both the Light's and Pacific Labs. This does not mean that we fully understand it - we are only just starting to understand it. Now while the Light's research is cutting edge technology, and so it can be argued that it requires extensive replication, the same is not true of the technology used by Pacific Labs. This is well replicated technology, the gold standards of exercise physiology. Its used all around the world. That doesn't mean we don't need more research, and in particular some replication of results by someone other than Pacific Labs, we do. Its just that these results are serious enough that any serious researcher in exercise and CFS has to engage in debate about them. Period. I don't think there is any known scientific basis to refute their results - doing so will require some serious science and hasn't been done yet. Those who consistently and repeatedly ignore this (and the Pacific Labs research goes back 9 years I think, although it only achieved prominence about six years ago) are just dabbling in exercise physiology. They have no scientific credibility, in my view, on this topic. This includes all the exercise research on CFS by those pushing the psychogenic viewpoint since possibly 2003, probably 2006, and definitely since 2009.

    Now I do agree with oceanblue's point that its hard to compare maximal exercise with submaximal. However the gold standard is maximal exercise testing. This gives you the most reliable results so far as I am aware. So for that research to not have relevance to submaximal exercise would indicate, to me, that something weird was seriously wrong. Indeed that might be the case, and I am certainly interested in more exercise testing along these lines - we are going to need more research for a long time to come.

    Bye, Alex
     
  17. oceanblue

    oceanblue Senior Member

    Messages:
    1,174
    Likes:
    343
    UK
    Hi Alex, I completely agree with you about the need for independent replication, and that this work has yet to run its course. If you check out the literature you'll see that most studies do use maximal exercise testing (eg Fulcher, De Becker) and the results are not clear cut. I thought the Pacific Labs work looked incredibly exciting, but the replication they'd talked about appears to have been this damp squib from 2011. So it would appear they can't replicate their findings either. If you know different, please do let me know - I'd love for them to be right.

    Maybe other labs will try to replicate their findings too but I am concerned about maximal tests in general as I think an awful lot of patients would risk a relapse in taking them - I know I would. That's why I was particularly interested in the Light's work based on 'moderate' exercise testing regimes.
     
  18. alex3619

    alex3619 Senior Member

    Messages:
    7,430
    Likes:
    11,845
    Logan, Queensland, Australia
    Hi oceanblue, I agree with concerns about maximal testing. Submaximal exercise testing is much better in terms of risk, and once we understand the mechanisms its likely we will not need to exercise at all for testing.

    As for Pacific Labs the point is that they can show demonstrable problems in a subset of patients - that is something objective that can be further researched. I do not currently expect them to be universally successful - like many others I suspect we are a very heterogenous group regardless of criteria. Once we have a range of good biomarkers to play with, I would be very interested in knowing which biomarkers match the Pacific Lab abnormalities - maybe then we can dispense with the exercise tests.

    Bye, Alex
     
    Desdinova likes this.
  19. INKY

    INKY Inky

    Messages:
    13
    Likes:
    0
    Brighton
    Dear Silverblade, Monsanto are planning to reintroduce 2,4-D to the Maize fields because the weeds have adapted to Roundup and they have developed a Maize tolerant of 2,4-D. I wonder how long it will take them to develop a human tolerant of 2,4-D...
     
  20. alex3619

    alex3619 Senior Member

    Messages:
    7,430
    Likes:
    11,845
    Logan, Queensland, Australia
    Oh, thats easy INKY. Spay 2,4-D on everything, let billions die, the rest are tolerant.
     

See more popular forum discussions.

Share This Page