Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Long-term experiences of managing CFS/ME: A qualitative study

Discussion in 'Latest ME/CFS Research' started by JaimeS, May 31, 2016.

  1. JaimeS

    JaimeS Senior Member

    Messages:
    3,199
    Likes:
    11,798
    Mid-Ohio Valley, United States
    Williams, D. S. (2016)

    Wow. So, if you want to find out what they're teaching their students, here is a doctoral thesis out of UWE Bristol that introduces so much awfulness so fast, it may make your brain explode. Be forewarned.

    Myalgic Encephalomyelitis or Encephalopathy (ME) translates to pain and an inflammation
    of the brain and spinal cord (Campling and Sharpe, 2008). However, to date there is limited
    biological evidence of any inflammation or conclusive biological markers (Hamilton et al,
    2005), so the Centers for Disease Control and Prevention (CDC) suggested a more
    accurately named Chronic Fatigue Syndrome (CFS) in the late 1980’s (Arroll and Senior,
    2008).

    I love that the 'lack of evidence to date' citation is 11 years old. Uh, Maes? Hornig and Lipkin? Newton? No, no, never mind, most of that has happened in the past 10 years, and is therefore immaterial; and the name created in the 1980s needs no updating because it is accurate and wise.

    They're not even trying anymore. The student goes on to say that people prefer the label ME "as it sounds more medicalised" and uses "CFS/ME" to describe the illness because "that is what is used in the literature".

    I guess she's reading papers by the same three authors over and over again, as that is the least common name.

    Criminey, this woman is currently out in the world and practicing psychology.

    -J
     
    alex3619, Hutan, ahmo and 11 others like this.
  2. Ben H

    Ben H OMF Correspondent

    Messages:
    755
    Likes:
    8,427
    U.K.
    I love how so much of the terminology is the language that the psychs love so much; 'Awareness', ' Acceptance' 'Connection with self'. Pathetic. The lack of science is strong with this one. o_O

    This is also a local University to me, sad to say. I almost chose to go here, but not in the end. Skimming through it represents the situation we Brits and the world are faced with very well.

    The lack of evidence citation is utterly unforgivable. Heads in the sand. They love their Sharpe and Chalder references though. Funny that.

    They are going to look all the more foolish when Davis publishes his findings soon.

    Sad that this is someone's thesis by the looks of the acknowledgement section. It's downright cringey. I guess the response 'what a crock of shit' is probably not constructive criticism, despite accurate...

    I'll give it a closer read later, when I want to be wound up.

    B
     
    Last edited: May 31, 2016
    MeSci, AndyPandy, Hutan and 9 others like this.
  3. JaimeS

    JaimeS Senior Member

    Messages:
    3,199
    Likes:
    11,798
    Mid-Ohio Valley, United States
    The thing is, I squirm on behalf of decent psychs who truly want to help people. Awareness of one's condition, acceptance of its limitations and what it means for one's life, and connection with self ARE important to living a life with ME -- at least, if you want to not live every moment as a tiny ball of rage and despair.

    This doctoral student is starting from such a place of sheltered ignorance, however. I find it mind-blowing that she could have had so many interviews with patients and still retain the point of view nurtured in her by her professors. And her insistence on citing only older studies shows that she knows that's the only place she can find anything to support her mentors' points of view. She had to know a lot of the more recent studies contradict them. There *have* been persistent findings related to inflammation in ME/CFS. I'm pretty sure her thesis advisor strongly advised her to steer clear of them.

    I don't think they'll believe they look silly. I think they'll stick to their guns. The only difference is that the medical community will gradually make them outliers.

    -J
     
    actup, Mel9, TiredSam and 5 others like this.
  4. JaimeS

    JaimeS Senior Member

    Messages:
    3,199
    Likes:
    11,798
    Mid-Ohio Valley, United States
    Not an indictment of this doctoral candidate in particular, but I do also sometimes wonder how well the psychs understand the biomedical stuff.

    A lot easier to dismiss if you have no earthly idea what they're saying.
     
    MeSci, Hutan, Mel9 and 4 others like this.
  5. Ben H

    Ben H OMF Correspondent

    Messages:
    755
    Likes:
    8,427
    U.K.

    The thing is, having studied psychology at first year at university level, aswell as biochemistry first year, is that in my experience, we were taught NOTHING about the biomedical stuff on the psychology course. And this was the same for 2nd and 3rd year of study, from the people I know who continued the course. I would be willing to bet that most psychologists do not have a basic understanding of biochemistry, based on university courses, in the UK. It simply isn't taught, certainly as recent as 2005-2008.

    And that is the fundamental issue I have with all of this. Psychology being the vessel to treatment/ management on what is an illness steeped in abnormal biochemistry. It is absurd.

    I'm a fan of self awareness, meditation etc as much as the next person. And you are right, without utilising an element of this, we would drive ourselves insane with this disease. But the saturation of these terms over and over, in the place of real, scientific research, is dangerous and has lead to the situation we are in. It would be nice as an adjunctive therapy, not as the leading one.

    Anyway, I'm spouting stuff we all already know. It is shocking--though with the track record it shouldn't be-- to see it published in 2016 however.


    B
     
    Last edited: May 31, 2016
    MeSci, actup, Mel9 and 7 others like this.
  6. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    Yup... that looked pretty annoying.

    Worrying that this how people are being 'educated'. Has any spotted any real attempt to critically engage with the research being cited? So many theses on CFS seem to happily ignore that fact that huge swathes of research in this area are quackery. It's like they're encouraged to read 500 abstracts and trust them, instead of reading 5 papers and taking the time to consider whether any of them are any good.

    I only looked through the first 35 pages, but don't feel inspired to read on.
     
    Last edited: May 31, 2016
    MeSci, Hutan, JaimeS and 3 others like this.
  7. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,816
    Hah, citing Arroll even. Not just a psychobabbler as a source, but a newbie as well.

    I don't recommend reading it. It's a lot of superficial blather, with bad grammar all over the place.
     
  8. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,552
    Europe
    What they usually say is: "None of these ME biomedical studies to date have any value UNTIL they are replicated. But they haven't been replicated so far, so that must mean that they were false to begin with." Seriously, I've heard doctors say this.
     
    MeSci, actup, Mel9 and 6 others like this.
  9. Invisible Woman

    Invisible Woman Senior Member

    Messages:
    1,212
    Likes:
    7,414
    And yet they ignore the fact that when the Belgians(?) tried to replicate PACE in 4 different treatment centres they found it didn't work!
     
    MeSci, Hutan, ukxmrv and 7 others like this.
  10. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,861
    Oh no, bad grammar too ? I can prepare myself for psychobabble, but bad grammar is just intolerable.
     
    AndyPandy, Hutan, ukxmrv and 8 others like this.
  11. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,552
    Europe
    Just for the sake of accuracy :nerd: : an official independent group did a critical literature review (aka academically shredded PACE to pieces) and saw their review confirmed in the absolute null results in all local treatment centres where the PACE protocol had been put into practice. But that doesn't count either for the biomed deniers. I don't think they'd recognize biomedical proof if it hit them in the face.
     
    MeSci, Mel9, Comet and 4 others like this.
  12. JaimeS

    JaimeS Senior Member

    Messages:
    3,199
    Likes:
    11,798
    Mid-Ohio Valley, United States
    A lot of the cytokine findings have been repeated by multiple studies at this point. TNF-alpha findings are pretty consistent across the literature; IL-12 is as well. I've been keeping an eye on the literature after Hornig and so far the findings have been (relatively) consistent re: cytokines, study-to-study, so long as they're breaking patients into 'acute stage' and 'chronic stage'. Multiple findings that indicate B-cell abnormalities have been replicated as well.

    And the list goes on; but I'm sure they don't search too hard for that which invalidates their hypotheses.

    Psychological hypotheses are not actually objectively testable, so again... I'm pretty sure that they don't know that what they're saying does not jive with logical reasoning.
     
    MeSci, actup, Mel9 and 4 others like this.
  13. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,552
    Europe
    Relatively consistent in their mind equals not consistent. :zippit:

    And that comes from a field where NOTHING has been proven, like EVER.
     
    MeSci, Ben H, Comet and 4 others like this.
  14. lnester7

    lnester7 Seven

    Messages:
    2,401
    Likes:
    3,456
    USA
    This is actually very good. This highlight the gap and the opportunity to make a change where it matter.
    The point is the training materials for DOCs is crap so,
    1) What is the official mechanism to update the material.
    2) Who owns it? How can we "own it" or have influence as a community to the material, so we keep it up to date with the latest and greatest.
     
  15. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,467
    Likes:
    10,480
    Cornwall, UK
    Sadly I think it's a case of good luck with that. If you look at the syllabus for UWE Bristol's Health Psych doctorate, it's unbelievably waffly:

    There's nothing that you could call 'medicine' in there, which is why I find it appalling that postgrads on this kind of course are often encouraged to pontificate on the nature of a disease which ruins millions of lives and leaves many bed-bound for decades. They are in absolutely no way qualified to do so, and their teachers are in no way qualified to supervise them in such endeavours.

    Sadly, too, if you were to go through the list of faculty for that university's Psych department — about 70 of them at a rough count — I bet there will be endless examples of biopsychosocial 'research' to their names. The problem isn't the materials — it's the staff. British psychology is stuffed full of people who just love the whole medically unexplained symptoms babble. And they're passing it on to huge numbers of students. UWE Bristol is one of many oversized psych faculties in the UK, all of them much the same.
     
    MeSci, Valentijn, TiredSam and 3 others like this.
  16. JaimeS

    JaimeS Senior Member

    Messages:
    3,199
    Likes:
    11,798
    Mid-Ohio Valley, United States
    In this case, this person has just written her doctoral thesis. This is not very public information, and I only got it because I have Google Scholar alerts. As with many PhD theses, we may be the only ones to see it.

    I think that the person who wrote this is not an experienced therapist, having only just earned her PhD. I debated about putting it up here, but I have to say that it's indicative of the way therapists are trained in that part of the world right now.

    The biopsychosocial model is going to die eventually, but it's going to go very slowly. Just as there are still Freudian traditionalists floating around today who believe everything is about hysteria and penis envy, there are going to be BPS therapists 30 years from now who insist that fatigue in ME -- and all other kinds of fatigue -- are perpetuated by 'illness beliefs' and 'exercise phobia'. It's been too prevalent to not keep some of its adherents, and as we've discussed elsewhere, holding this point of view is very psychologically attractive to the therapists themselves.

    I think that those who proposed it are going to have to literally age out of the system before therapists are taught from a biomedical perspective of psychology. As discussed elsewhere, the 'bio' in 'biopsychosocial' is a misnomer; students are taught about psychology and sociology, with no biomedical aspect whatever. And the sociology bit and the psychology bit are both on very shaky ground; the students are expected to trust the wisdom and experience of their betters, in terms of how they think about and process illness.

    The problem is that after you really do start talking biology, the only thing you're left with is a very basic form of talk therapy, as in "it helps people to talk things out". Everything else will be biomedical.

    ....And then the industry shrinks.

    -J
     
  17. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,467
    "...And then the industry shrinks"...do what? Go to their local BPS therapy meetings once a month where they treat their addiction/delusions? Who would their therapists be? (Please let the therapists be Freudians...)

    Oh, you didn't mean shrinks in that way.

    Well, maybe not consciously...Bwa ha haaaaa!!!!
     
    JaimeS, Mel9, Ben H and 2 others like this.
  18. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,467
    Likes:
    10,480
    Cornwall, UK
    And you were right to post it, though I'm sure we all share your qualms. It breaks my heart to see (doubtless) bright and well-intentioned young people being led in this direction, but it's very central to the problems we face, especially in the UK. And it's important for everyone to understand that psychology training, even at doctoral level, includes very little that could be described as medicine and not much that could be described as science.
     
    Last edited: May 31, 2016
    MeSci, Valentijn, JaimeS and 3 others like this.
  19. Keith Geraghty

    Keith Geraghty Senior Member

    Messages:
    155
    Likes:
    3,290
    i am very reluctant to criticise a PhD student, given a PhD student is a novice and juniors should be properly supervised and often the quality of the supervision is as much to blame for poor output, as the student.

    If I was an examiner of this thesis - and I wish I was, the first problem I see is the low number of interviews = 9 out of a sample of 1298 - then the mean age of 55 is much higher than mean age of ME population and the other demographics arent representative -- this is without even looking at the findings or design- in my time, which wasnt too long ago, a PhD would include a minimum of 50+ interviews, some triangulation with other methods to support qualitiative findings, and some deep awareness of biases in qual research - which are mainly the perceptions and preconceptions of the researcher

    i couldnt see a PhD getting past me with onlly 9 interviews -- so is there more work --- ill keep reading this thesis, just flicked: they also do not address the key limitation of the small number of interviews - but do say that they "refused to take phone interviews with severrely unwell patients" due to research ethics and the need to see body language, which is bizarre to me given the tiny numbers interviewed.
    upload_2016-5-31_20-4-19.png
     
    Last edited: May 31, 2016
  20. Keith Geraghty

    Keith Geraghty Senior Member

    Messages:
    155
    Likes:
    3,290
    In the conclusion this would have had me asking this student how their 9 interview qualitative study supported this statement "
    The findings compliment the use of current behavioural treatments for the management of
    the condition to reduce the impact on a person ’s life by targeting the perpetuating factors of
    the condition." "The study also echoes the theoretical value of using alternative treatment
    approaches based on acceptance-based models of change."

    I fear the trend of drawing conclusions out of the air, not supported by the actual data is evident here.
     

See more popular forum discussions.

Share This Page