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The Psychologist - views of ME

Discussion in 'Action Alerts and Advocacy' started by Jenny, Jul 1, 2011.

  1. Jenny

    Jenny Senior Member

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    The Psychologist (the monthly publication of the British Psychological Society) recently published a summary of the findings of the PACE trial, exaggerating its effectiveness. Oceanblue and I wrote a letter in response to this article which they published in the June issue (see post 968 in the PACE trial thread), along with another mainly critical letter.

    In the July issue they've published a letter by Kristina Downing-Orr which supports ours, saying that CBT and GET are 'as useless as a chocolate teapot'.

    All very encouraging, but also in the July issue they've published the following summary of a paper presented at this year's annual conference, defining ME (though they call it CFS) as a 'functional somatic syndrome' :

    Costly conundrum
    Chronic fatigue syndrome (CFS) presents healthcare providers with a costly conundrum. Known by medical professionals as frequent consulters, sufferers of CFS tend to report around 16 different symptoms per patient. Most commonly these include concentration difficulties, muscle pain, fatigue, weakness and fever. At present there is no known underlying cause for CFS and no coherent approach to treatment. Moreover, outcomes for patients vary wildly depending on how improvement and recovery are defined and measured. Marie Thomas (University of Wales), Andy Smith (Cardiff University) and Gary Christopher (University of the West of England) ran a three-year study with the aim of developing a toolkit that would help to understand outcomes for sufferers of this most mysterious of functional somatic syndromes (others in this family include irritable bowel syndrome, tinnitus and chronic lower back pain). Over 200 patients were recruited from specialist CFS clinics and asked to fill out measures of well-being, quality of life and psychopathology as well as symptom checklists and measures of illness beliefs, history and severity; 84 per cent of participants believed that their illness had been preceded by a specific event, often a bout of flu. At three-year follow-up, 45 per cent said they were recovered with occasional relapses, while only 2 per cent felt they had recovered completely. One of the best predictors of recovery seemed to be employment; participants who were in work at initial testing were more likely to be in the recovered group at the end of the study.
    Sarah Haywood


    Also, disappointingly, in the electronic version of the journal their monthly 'special paper from the archive' is a paper by Peter Spencer from 1998 entitled 'CFS - a suitable case for treatment' which is a description of one person's recovery which he attributed largely to CBT.

    So they seem to be interested in ME at the moment, and I think they may be receptive to an article reviewing the evidence for ME as a serious physical illness, and questioning the role of psychologists in its treatment.

    Anyone up to writing something like this and submitting it to The Psychologist? I'm not sure if you have to be a psychologist to submit material, but I am, and would be happy to collaborate. I don't have access to the literature so couldn't do much substantively, but could help stylistically (I used to be an editor of an academic psychology journal).

    Jenny
  2. Bob

    Bob

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    Thanks for that Jenny.
    It seems surprisingly balanced, considering it's published in a psychology publication.

    Helpful:
    They report that ME patients have many different symptoms, not just fatigue.
    They admit that there is no coherent approach to treatment.
    They say that only 2% or patients completely recovered after 3 years.

    Unhelpful:
    Obviously the 'functional somatic syndromes' description isn't desirable or helpful.
    There is no definition of the term 'recovered with occasional relapses'.
    People reading it could be left with the impression that employment helps recovery, whereas it seems obvious that those who are the least ill in the first place would be able to maintain employment, and so the level of the initial severity of the illness might be a better predictor for 'recovery', rather than if someone is in employment.
  3. Esther12

    Esther12 Senior Member

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    How true is this 'frequent consulters' thing. I and most of the people with CFS I know seem to have given up on getting any help from our doctors. 3/4 visits a year for little other things, benefit stuff, etc - considering that we're living with chronic health problems and no outside help, do CFS patients really have many more medical appointments than equivalent patients?

    When I was first ill I kept being told that I'd be better in six weeks, so went to the doctors every six weeks to see what they'd have to say next. After a while of that, I gave up with them. I would have thought it would be normal for patients to consult a lot at first, seeing as they're often given poor and inaccurate information which needs correcting.

    re employment: If this was measured by employment rates after getting ill, rather than prior to, then as Bob said, this is probably largely a measure of disability/severity of illness. If this confounding factor hasn't been accounted for, then they're claim seems rather misleading to me.

    (I'm just focusing on the negative here! Ta Jenny).
  4. maryb

    maryb iherb code TAK122

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    You are right Esther - how many of us really consult our NHS GPs that much, I saw mine once last year, during that time I had 2 bouts of the EBV virus re-activating, (tests immediately afterwards showed it was active) bedbound and unable to eat for a week, my husband asked to call the doctor, what for?? they are useless, they'd rather see you suffer than do the correct tests so I'll take my chances without the NHS.
    Like you say at the beginning of the illness you think they must be able to help me, I'm ill can't they see?? Ermm no. The message got home when I told the doc my legs kept shaking every time I went to the loo, its anxiety she said and offered Amitriptyline.
    Re employment - they say those in employment at the start of the study were more likely to be in the recovered group at the end, so????? this doesn't mean anything... Please someone save us soon from more of this complete c**p.
  5. alex3619

    alex3619 Senior Member

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    I concur with the visits issue. I would only see a doctor three or four times a year myself, and for years it was only for routine things like prescriptions. I also know of a severe patient who almost never sees a doctor - they don't visit, and this patient is too sick to travel any distance at all.

    My best guess is that they are either referring to new patients, still trying to understand or get a diagnosis, or some other kind of patient entirely (anxiety disorder perhaps?). The only other interpretations I can see are blatant hyperbole or spin.

    Bye,
    Alex
  6. kaffiend

    kaffiend Senior Member

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    I think this line is easily addressed and should be. "At present there is no known underlying cause for CFS"

    The peer-review circle for these publications is clearly self-referential. If you ask pubmed about "chronic fatigue syndrome cytokines" you are given 262 results. Intellectual laziness is most the charitable reason I can come up with for excluding mention of any physical cause. A more cynical view suggests deeply entrenched interests that benefit from continuing this point of view (more pubs on the CV, name in the paper, grant funding, etc).

    I have access to journals (UC system). If I can string together a few good days, I can write up a literature review/intro of recent findings from immunological, neural, and infectious disease studies. It's hard to argue with good evidence.
  7. mellster

    mellster Marco

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    I think another reason for the durability of this outdated view that CFS is of psychological (and/or psychosomatic, the boundaries are never clearly defined) nature is the fact that quite a few patients experience symptom reduction when put on anti-depressants - which is not hard to explain as downregulating a system in disarray likely will result in some pain reduction across the body though it does not address the root causes. This observation probably fuels the view of CFS being a psychological disorder.
  8. Enid

    Enid Senior Member

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    Thanks Jenny.

    Can I add a thought about "frequent consulters .......suffers tend to report around 16 different (exaggeration ?) symptoms per patient". I noticed my own Docs (since given up) were very confused by the multi-system nature of symptoms. I heard of a local GP Practice with a notice to patients "no more than 3 symptoms at a time" - ME just doesn't fit into their diagnostic pattern/thinking - presumably that's why medical professionals can be so negative.
  9. Bob

    Bob

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    It's a takes a while to learn that they aren't going to do anything for you, doesn't it!
    I was definitely a 'frequent consulter' in the first year of illness.
    I still visit regularly because I pick up a prescription of clonazepam regularly, and I've also got hypothyroidism so I need regular blood checks.

    I can't remember where, but I have heard somewhere else that UK doctors see a lot of their ME patients.

    It would be interesting to find out if the 'frequent consulters' label is based on evidence, or if it is just anecdotal. And how would it be defined?

    It might be the case that doctors spend a lot of time with a minority of their ME patients, but a majority don't consult regularly.

    Giving us a 'frequent consulter' label should be based on evidence.
  10. alex3619

    alex3619 Senior Member

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    Hi Enid, I have had many dozens of symptoms, and can have quite a few at one time. Some of us have counted ninety or more symptoms. ME/CFS involves dysregulation of multiple command and control systems - nervous, immunological and immune systems. There are many hundreds of proteins that are not supposed to be there. The real surprise would be if ME/CFS only had one symptom, like fatigue.

    On fatigue I don't just think we need to retire CFS, we need to retire the use of the diagnostic category of fatigue. It is false and misleading in and of itself.

    Bye
    Alex
  11. kaffiend

    kaffiend Senior Member

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    I think a simple proof-of-principle for graded exercise or cognitive therapy could be demonstrated through a scavenger hunt with CFS/ME patients as the participants. Throw in a control group for good measure. Provide accumulating monetary incentives or a substantial one at the end. The event has to stretch across at least three days and can be as simple as going to different places around town to find rewards or clues. It wouldn't be much more difficult than a full day of errands.

    I wouldn't last two days - and I could really use the money.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I sent them an email. Pls send them one too if you have the time.

    To:
    jon.sutton@bps.org.uk
    psychologist@bps.org.uk

  13. Snow Leopard

    Snow Leopard Senior Member

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    Actually, the results of blinded RCTs have found that although certain anti-depressants (MAOIs, but not SSRIs) work to reduce depression, they do not significantly reduce symptoms of fatgue or disability.
  14. Tulip

    Tulip Guest

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    I think people with kids top the list of "frequent visits to the doctor/emergency" and mostly for trivial things like a cold. Being a parent myself I see this a lot, every parent I have had contact with and parents on online parenting forums, fly off to the doctor/emergency instead of using their common sense.

    I personally hate going to the doctors, it's a complete waste of time and usually full of insults from the doctor - great for the self esteem!.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Interesting how they said those that were working when they got cfs and continued to work were most likely to recover, 9 years on and im still sick and struggling to to keep my head above water while working. If i didnt work how am i suppose to survive financially, cfs/me isnt recognised for social security. I could probably do a shonky depression thing and get social security and maybe survive on my own financially but it wouldnt cut it try to support a family. I think that psychs view is a big crock. I would like to see some immune and viral testing on the ones who didnt fully recover, that might split their group between cfs/me and people with depression, maybe, even though the 2 can co-exist. If it wasnt for antivirals and being treated by a doc who understands i probably wouldnt be able to work at all.
    As for docs visits, every 3-4 months for prescriptions and out of my paranoia have stopped whinging too much about all my symptoms for fear of being labelled a nut job, although my doc would understand anyway.

    cheers!!!
  16. biophile

    biophile Places I'd rather be.

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    Yet we are also supposed to believe that the PACE trial participants represented the "average patient", so let's look at the symptom count in Table 6:

    SMC @ 0 weeks: 47 (SD=17)

    CBT @ 0 weeks: 46 (SD=18)

    SMC @ 52 weeks: 39 (SD=22)

    CBT @ 52 weeks: 34 (SD=23)

    Perhaps there are differences in how physicians in general count symptoms and how the PACE trial counted them, but it seems that 16 symptoms is far from normal when looking at the common but flawed broad approach of the PACE trial. So either 16 isn't normal as suggested by Haywood, or they are looking at a different group of people. I have also read somewhere that symptom count is a factor in prognosis.

    While some patients may view a higher number of symptoms as indicative of worse disease, to most biopsychosocialists AFAIK more symptoms are usually indicative of more "somatisation" and stronger "abnormal illness beliefs".

    Additionally, Wessely and the PI's of the PACE trial have pointed out on numerous occasions elsewhere that more symptoms means more "psychiatric comorbidity" (eg anxiety and depression), but they fail to mention that (1) this relationship exists regardless whether symptoms are medically explained or not, so it could reflect the severity of a disease or the despair/suffering experienced by patients as their lives are ruined; (2) Jason et al conducted a small study in which when compared to the CDC 1994 criteria this supposed relationship ironically went in the opposite direction with the Canadian criteria ie the higher symptom count somehow led to a reduced prevalence of psychiatric comorbidity, IMO because it does a better job at capturing the characteristics of "ME/CFS" vs the epidemiological artifacts caused by the poor CDC criteria and lumping together idiopathic chronic fatigue with associated anxiety and depression.

    I'm going to be really annoyed if we are still putting up with studies that fail to take into account the obvious such as those in employment weren't as impaired as those who weren't or had better access to treatments etc. It is sad that in 2011 we are still suspicious that this is the case!

    45% sounds high, maybe they just need a round of CBT to convince them they are really "recovered"? :p

    As for visits, I can imagine many patients visiting doctors a lot during the first several years when trying to find out what's wrong as their lives fall apart, but then many long term patients stop regular visits due to the futility and/or dismissal of it all.

    If the authorities want new patients to stop being such a "drain" on the health care system then they should put money into solid research so these patients can be better treated straight away.
  17. Dolphin

    Dolphin Senior Member

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    The PACE Trial data was on the number of CDC symptoms. It was out of 8, possibly 9 (i.e. incl. Fatigue - the clarification to the MEA suggested 8 but it was still slightly unclear).

    So they couldn't record 16 so one can't read much with regard to the total number of symptoms patients had from that table.
  18. Tulip

    Tulip Guest

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    I think using some of prof hoopers "magical medicine: how to make a disease disappear" to conteract all of these false claims is a good idea, it covers everything from GET to ME deaths.

    It can be downloaded here (all 442 pages of it!): http://www.meactionuk.org.uk/magical-medicine.pdf

    God bless prof hooper :thumbsup:
  19. Tulip

    Tulip Guest

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    Heapsreal, it is recognised by centrelink, but it is a bit of a battle to get on the dsp!. Whilst the dsp itself is a pittance when you have kids under 16 you are also eligible for family tax benefit a and b which bumps it up to a more respectable but still rather crappy income (speaking from personal experience here!) :Retro smile:
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Thanks tulip, I have heard its very hard to prove you have cfs/me. Its something thats on my mind alot lately as its been a struggle the last 6 months. Im sure dr Deed who i see has had a few patients go down that line. I will have a shot at using valcyte and reassess from there.
    One more thing, if my wife works part time and is a low income earner, are you still entitled to centrelink payments?

    cheers!!!

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