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!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

Lancet Editorial - Peter White & Trudie Chalder CFS: treatment without a cause

Discussion in 'General ME/CFS News' started by Dolphin, Feb 29, 2012.

  1. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,159
    Full text of this isn't currently available for free.


    It accompanies this Dutch CBT paper in the Lancet: Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial - thread on this in research section: http://forums.phoenixrising.me/show...et-based-CBT-for-CFS-an-RCT-(Nijhof-et-al-12) .

    It's very handy for them that very often when a CBT/GET/similar trial comes out, a CBT/GET fan also gets to write an editorial along with it! :(
     
    markmc20001 likes this.
  2. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,149
    Likes:
    1,720
    Somewhere near Glasgow, Scotland
    In the lack of hard facts and honesty, where peopel are desperate, worms selling snake oil and superstition always emerge...
    Not much has changed in 5,000 years, has it? ;)
     
    Enid, justy and justinreilly like this.
  3. user9876

    user9876 Senior Member

    Messages:
    794
    Likes:
    1,948
    The original paper and comment seems to be available at http://press.thelancet.com/FITNET.pdf although to understand what was done you need to also look at the trial protol publication which has very little information about the control http://www.biomedcentral.com/content/pdf/1471-2377-11-23.pdf

    I think the interesting thing is that the usual care seems to be come undefined mix of CBT/GET as would typically be delivered in practice and as Peter White points out in his commentry is remarkably ineffective (he uses different words!).

    So when we get to the detail we are talking about delivery mechanisms that is delivery via internet. Others have looked at telephone based delivery http://forums.phoenixrising.me/showthread.php?15757-CBT-for-CFS-in-Adults-Face-to-Face-versus-Telephone-Treatment-A-RCT-(Burgess-et-al)

    The question is why is their internet treatment so much more sucessful? I've only skimmed the paper so don't really have an opinion yet. It could just be an outlier.
     
  4. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,692
    Likes:
    10,142
    Amersfoort, Netherlands
    The farther away we stay from CBTers, the better we do? :p

    It's quite possible that compliance with online "treatment" is lower, resulting in less PEM and faster recovery among a group that has a good recovery rate to start with.
     
    greebo, Dolphin and justinreilly like this.
  5. Marco

    Marco Old blackguard

    Messages:
    1,387
    Likes:
    1,066
    Near Cognac, France
    I'm forced to agree with Peter white in this case.

    Re quinine (courtesy of Wikipedia) :

    Indeed, the efficacy of quinine was discovered empirically (no doubt over a long period of time and many trials and errors). Not via the 'scientific method' or 'gold standard' RCTs. No doubt today their individual experiences would be dismissed as anecdotes.

    On the other hand, the experiences of many thousands of ME/CFS patients who know that exercise makes their symptoms worse are dismissed as 'faulty cognitions' and their complaints as an 'organised conspiracy'.

    We don't need to know the cause of the disease to know what makes things worse.
     
    Dolphin and justinreilly like this.
  6. Bob

    Bob

    Messages:
    8,855
    Likes:
    12,423
    South of England
  7. oceanblue

    oceanblue Senior Member

    Messages:
    1,174
    Likes:
    343
    UK
    I've now read the editorial and Peter White certainly sounds surprised by the scale of improvement reported for the FITNET group - as well as by the poor results for the 'control' CBT/GET group. He suggests that 'doseage' may be a factor i.e. more contact with therapists (via email for FITNET group) than the control group received.

    Perhaps that's why he comments "An assessment of whether the intervention was cost effective would be of interest." 12 months on, PACE have still to publish the promised data on cost-effectiveness. Maybe there's a reason for that.

    He also says:
    This is a bit rich. Although using mean-2SD is indeed a liberal threshold for recovery, at least the Nijhof study used the SD for a healthy population. By contrast, the PACE trial used mean-1SD to definie 'normal', but the reference population included those aged over 65 and those with a chronic illness. Had PACE used the Nijhof definition of mean-2SD for a healthy (and working age) population, they would have come up with a higher threshold for 'normal' and fewer patients would have reached this threshold.
     
    Dolphin, justinreilly and Firestormm like this.
  8. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    UK
    What more can you expect from the Lancet. Supporting their own, clutching at straws, ignorant of all the pathological findings (outside the UK) over years of research - what ostriches.

    Dolphin - White (psycho) - Chalder (psycho nurse only) - do not fool us any more.
     
    justinreilly likes this.
  9. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,149
    Likes:
    1,720
    Somewhere near Glasgow, Scotland
    Another person dies horribly of this disease, and these arrogant, evil, demented SCUMBAGS still harp this complete GARBAGE?! :headache:

    Sooner they face a criminal court for gross negligence and/or homicide, the better
    Any other illness, that's exactly what would happen to them.

    And this "wonder study using the internet", the figures are so far off it HAS to be a scam or screw up.
    To Hell with these assclowns!

    Jebuz, if I had my old brains back I'd go hunt up the nutbar crap "studies" the Eugenicists etc did in the early 20th century to show exact parallels
    This is NOT science, this is NOT caring for patients, this is them trying to shore up their BULLSHIT hysterical belief system as it crumbles around them, that has nothing to do with reality or compassion, as the rest of science starts to, with good reason, disown these charlatans and prove they are full of excrement!

    THIS IS NOT SCIENCE, THIS IS SUPERSTITION!!


    ah well, every time these bozos open their mouths, it leaves more evidence for their future trials before a jury. ;)
     
    justinreilly, Wildcat and Nielk like this.
  10. Nielk

    Nielk

    Messages:
    5,458
    Likes:
    5,990
    Queens, NY
    This is a good time, I think, to discuss accountability. What are the accepted "scientific" perimeters? Can anyone do a study with no supervising agency and report back whatever facts they wish? Does anyone go and check these facts? How do they define "sick"? "better", "improved", "cured?????????????".
    The whole "study" is just so bizarre.
     
    justinreilly likes this.
  11. Esther12

    Esther12 Senior Member

    Messages:
    5,384
    Likes:
    5,887
    EDIT: Longer term follow-up found no difference between control and intervention groups. Looks like it was a fuss over nothing, and I was needlessly open-minded!

    http://forums.phoenixrising.me/inde...-rct-nijhof-et-al-12.14931/page-8#post-354752

    I've not looked at this study yet, but it's best to do so calmly, and with an open mind imo. There's certainly been plenty of manipulation of results around CFS in the past, and I'm not saying that we should naively trust these researchers, but we shouldn't assume everything they produce is pure rubbish either.

    It does seem strange that the terrible results for the control group (CBT and GET) are being used to promote how wonderfully effective CBT is, and more money needs to be spent on CBTers.

    I've not read the study (and will not have the time/energy to for some time), but I'd be interested to see if these results could be explained by something like: the psychosocial approach to CFS really messes people up, particularly when it's being imposed from a position of authority or expertise, and it could be that an e-mail type approach created a greater sense of equality, and encouraged patients to do more of what they thought was right, rather than follow the advice of quacks. If they were using a particularly loose definition of 'recovery', then just freeing patients from quackery could lead to some significant improvements.

    The Lancet press release was titled: "Two thirds of youngsters with CFS reporting recovery after receiving web-based therapy, say Dutch researchers" http://www.meassociation.org.uk/?p=10606

    Did the researchers actually ask the youngsters if they thought they had 'recovered'? Given the difficulty of defining recovery, that question seems like a worthwhile addition to a questionnaire.

    I think that my ideal medical approach to CFS would be: stop giving money to those who claim to be experts in treating chronic fatigue syndrome. Instead, explain to patients that lots of different things can cause a decline in energy levels, many of which are not well understood and can lead to a permanent drop in opportunities. Use the money that was spent on 'treatments' to provide patients with greater resources to pursue their own desires for life. Where there are solid leads, like certain viral infections (EBV) triggering a drop in opportunities, research to understand why the mechanics of that virus cause particularly long-lasting problems.
     
    Dolphin, Firestormm and TessDeco like this.
  12. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    UK
    White and Chalder dabbling around (ignorantly on a strange periphery to science - come on mrs hair on one side - mine fell out a long time ago due to the ignorane of medicine in the UK). Such as these people hinder, increase the suffering, delay real discoveries (ongoing) available to us all except in the UK.

    What on earth does a psychiatrist or psychiatric nurse know about virology or immunology or neurology. (All my family in them)
     
    Wildcat likes this.
  13. Bob

    Bob

    Messages:
    8,855
    Likes:
    12,423
    South of England
    Firestormm likes this.
  14. Guido den Broeder

    Guido den Broeder *****

    Messages:
    278
    Likes:
    180
    Rotterdam, The Netherlands
    This may become evident by presenting the same results in a different manner, something like:

    "Standard CBT/GET proven to be a total failure. Internet treatment closer to normal recovery rates in chronic fatigue."
     
    beaker, Bob and (deleted member) like this.
  15. jeffrez

    jeffrez Senior Member

    Messages:
    1,108
    Likes:
    644
    NY
    If internet-based CBT could potentially cure me, I'd be glad to give it a try. The brain & mind can definitely impact the body and immune system. It's not far fetched at all to think CBT might help in some cases, imo. Maybe there are important differences in internet-based therapy over f2f therapy that make all the difference. Haven't read the study yet, plan to get to it soon.
     
  16. Bob

    Bob

    Messages:
    8,855
    Likes:
    12,423
    South of England
    Well, this all depends on the definition of CFS that one uses.

    Clearly CBT could help some forms of chronic fatigue. (Chronic fatigue has many different causes, including psychological causes.)

    But CBT isn't going to cure ME, as defined by the ICC for example, any more than it is going to cure cancer.
     
  17. jeffrez

    jeffrez Senior Member

    Messages:
    1,108
    Likes:
    644
    NY
    And yet a significant number of people in the study did recover, and to a significant extent, too. The inclusion criteria might not have been the best it could have been, based on CDC definition, but the study nevertheless appears fairly rigorous.

    ME/CFS isn't the same disease or disorder as cancer, so you can't really generalize one to another. B/c the cause of ME/CFS isn't known, I think we need to keep open minds when it comes to possible treatments. This study specifically mentioned that the treatment approach focused on maintaining factors, not on causal factors, so it's possible that focusing on the "cause" could actually be a hindrance to recovery in many cases.

    Regardless, it's safe to say that the majority of ppl w/ ME/CFS haven't tried web-based CBT, and probably no one on this forum has -- where one interesting factor is the relatively high "dose" of treatment -- so no one can really say for sure that it wouldn't help any of us. I know that if web-based CBT was available to me, I'd certainly try it. What would there be to lose? GET doesn't appear to have been a component of the therapy, so it doesn't seem like any harm could come from it - and possibly a whole lot of good, if the results applied to adults as much as they seemed to here for children.
     
    Cort, Firestormm and TessDeco like this.
  18. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,532
    Likes:
    2,083
    London
    Mr Kite,

    You asked what we had to lose by doing the web based CBT. I've had CBT in a UK setting for people with ME and CFS (supposedly). It was a waste of my time and energy. During the time I did the CBT I could have had a bath, washed or brushed my hair, spoken to a good friend I'd not been able to talk to for years, cut my nails or performed many other tasks that I am simply too weak to do on a regular basis.

    We aren't all sitting at home wondering what to do. It's not like being unemployed. We are physically challanged and any activity must be weighed up on a cost benefit analysis. If I don't bathe I get rashes and infections. If I can't cook I can't eat.

    When I did the UK NHS CBT I was told that my experience of this disease wasn't true or accurate. The therapist had unhelpful beliefs about ME. They told me that exercise intolerance was "only" deconditoning. They claimed exercise was good for ME. I hate for any young person to go through what I went through.

    It may not be the same experience, it could be similar or totally different. The CBT and GET team have been presenting the same ideas dressed in different clothing for years now though. They change the name slightly, changed the way it is done slightly.

    Once you have been through a few from the same stable you think again before wasting your few resources.
     
    taniaaust1, beaker, Bob and 4 others like this.
  19. jeffrez

    jeffrez Senior Member

    Messages:
    1,108
    Likes:
    644
    NY
    Did you have web-based CBT? That was the subject of the study, not standard (i.e., non-web based) CBT.
     
    Firestormm likes this.
  20. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,532
    Likes:
    2,083
    London
    I realise that Mr Kite, hence by comment about the way CBT and GET are being dressed up and called different things / delivered in slightly different ways over time. I'm not going to keep doing the same programs just because they make small changes but the underlying harmful messages are still there.

    We had graded exercise of one type, CBT that tells ME patients that there experiences are not valid, graded activity, pacing that was really GET - some on the phone, some in person. They keep trying new forms of the same poison on us.

    We don't know exactly what this group went through and how it resembles / is different from clinic based. However, if the messages are still harmful (as in my case) it has the potential to damage ME patients health (as well as wasting their valuable resources).
     

See more popular forum discussions.

Share This Page