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Overlap between CFS and Depression?

Discussion in 'General ME/CFS Discussion' started by EllenGB, Aug 14, 2013.

  1. EllenGB

    EllenGB

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    Moderator Note: Posts have been split from the thread 'Simon Wessely wins prize for'Standing Up for Science'


    CFS is a syndrome. This is why it's so important for people with a range of opinions to communicate with each other. The likes of Heim, Friedberg and other scientists do consider it psychosomatic. As CFS is not a distinct entity and studies have shown it overlaps 97% with a psychiatric disorder (Farmer et al), one can argue that a subset is neurological (e.g. as Natelson does), and a subset is more psychological, as per White, Wearden, Friedberg, Heim and others. And what is ME/CFS? It's a political compromise. It has different definitions, mostly the same as per CFS, so it's really CFS. A scientist has to think clearly. This area is too political and subjective. People, for various reasons, are not doing what is usual for scientists and considering alternative views. I've been in this field so long, I no longer believe that CFS is a meaningful term and ME/CFS is no more meaningful. It's a mess. We need to get back to basics e.g. ask what do we all mean by the terms we use. Concentration is not a sign of a psychiatric disorder per se, so a red herring. Very common in all sorts of diseases, and the menopause. But also in stress, depresssion etc. Americans appear to have a thing against veterans, even American ones. They didn't listen to Shelokov in 1987 and are not taking enough notice of Prof. Jason. Ergo the mess. My opinion. After 30 plus years of researching ME and CFS.
     
  2. Nielk

    Nielk

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    I have to strongly disagree with you here. CFS is not 97% overlaping with psychiatric disorder and Natelson is not the only one who has a subset. It is considered a neuroimmune disease by most experts today. Even if one goes by the 1994 Fuduka criteria, CFS is not 97% psychiatric.

    The term ME/CFS was used with the CCC Canadian criteria. To say that it doesn't exist is ignoring what all the expert, clinicians ans scientists who have worked on that criteria have clearly stated.


    Then what would you say to the 1 million patients in the US who are clearly severely ill? There is no diagnosis of ME here. I could have the same symptoms as someone diagnosed with ME in the UK yet, here in the US, I would only get a diagnosis of CFS. Actually, my doctor who comes from Ireland told me that I fulfill the criteria of Ramsey's ME but, here in the States he can only give me a diagnosis of CFS.

    I think that anyone living in today's society is living with a certain amount of stress and depression. Does that mean that they don't also suffer from biological illnesses like diabetes, parkinson's heart failure? If the medical establishment cannot come up with a clearly define disease with a measurable biomarker, does that always mean that it must be psychiatric? Was AIDS considered a psychiatric disease until they found HIV?

    [/quote]Americans appear to have a thing against veterans, even American ones. They didn't listen to Shelokov in 1987 and are not taking enough notice of Prof. Jason. Ergo the mess. My opinion. After 30 plus years of researching ME and CFS.[/quote]

    Can you please elaborate?
     
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  3. user9876

    user9876 Senior Member

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    The terms ME and CFS are largely semantic less - I guess by that I mean they are labels that are used in different ways by different people. These days at least in the UK i doubt if anyone gets a ME diagnosis.

    The sematics come from the underlying diagnostic system being used in a particular case (e.g. the CCC, Fuduka or what ever). However even here the sematics are unclear since the diagnositic systems use a poorly specified exclusion process. Hence we get the situation with high percentages of mis-diagnosis.

    Some people may assign semantics to a given label but we need to be careful as there is no consistancy.

    In terms of Chronic Fatigue I always thought of it as a symptom and not a psychiatric disease. For example I knew someone who went to several GPs essentially complaining of chronic fatigue but was dismissed by many until one did a blood test and looked at the results and hence found a serious blood disorder. Surely if someone complaints of chronic fatigue this should be something to investigate further and assign to a catagory.
     
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  4. Nielk

    Nielk

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    We are suffering for the blunder of a name invented by two CDC lightweights at the Lake Tahoe outbreak in 1984.
     
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  5. Bob

    Bob

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    This is something that interests me. I might be wrong, but I can't imagine that you are comparing like for like here. There's hardly been any (if any at all) ME literature for 20 years or so, and since then the cognitive-behavioural lobby have been activity trying to associate CFS with depression, with some success.

    So we've got to compare the methodology between the ME and CFS papers, before we can compare depression in ME and CFS patients.

    The HADS questionnaire is often used by the cognitive-behavioural lobby for depression in CFS patients, and I'm certain that (what you consider to be) ME patients could get high scores for depression using the HADS questionnaire. But it's a very poor assessment of depression in CFS or ME patients, as it can't distinguish whether the problems relate to depression or pain or pain-related distress or malaise or disability etc.

    With this questionnaire, it can easily be 'proved' that CFS or ME are linked to depression. But it's very bad science to use this questionnaire to prove a link between depression and CFS/ME, for many reasons...

    For example, imagine how a CFS or ME patient would answer the following 'depression' questionnaire, if suffering from severe pain, severe cognitive symptoms, severe malaise, exhaustion and severe disability...

    HADS:
    I still enjoy the things I used to enjoy
    I can laugh and see the funny side of things
    I feel cheerful
    I feel as if I am slowed down
    I have lost interest in my appearance
    I look forward with enjoyment to things
    I can enjoy a good book or radio or TV programme
     
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  6. Valentijn

    Valentijn Activity Level: 3

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    Why? Was it more acceptable back then to coerce patients to use unproven and harmful treatments as a condition for getting benefits? Was it less outrageous to suggest that visits to specialists should not be allowed, on the basis of a lack of proven physiological causation? Was it considered good and responsible science back then to take an unfounded opinion and present it to a government committee as indisputably proven fact? Was lying to patients "for their own good" any less deceitful or paternalistic?

    And has he ever apologized for or rejected any of the things he said pre-2008? Or given ANY indication that he no longer holds the same beliefs regarding how ME/CFS patients should be (mis)treated?

    Here's post-2008 - basically saying the same things, often just less explicitly in public:
     
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  7. Enid

    Enid Senior Member

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    Well those quotes are a turn up for the books (from SW). Can't read all the thread through but will add my tuppence worth - the involvement of psychiatry historically has had a disasterous effect over decades for ME sufferers here. That includes playing with little knowledge of the real science and statistics (PACE). It can indeed be inevitable that driven to escape an A & E department surrounded by 4 Docs and a Psycho "all in your mind" disgust with them turns easily to loathing.
     
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  8. peggy-sue

    peggy-sue

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    Psychiatry is not a science, neither is psychology, nor medicine, although they are subjects which should be science.
    It's all a huge mess of political correctness at academic level, nobody actually has the guts to stand up to the pseudoscience carried out by such persons - there's too much money at stake, so they get away with it.
     
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  9. EllenGB

    EllenGB

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    Well Neil, didn't take long, did it? This is not just about frustration. Most of us patients aren't into daft generalisations and we're not anti-psychiatry per se. We know that the HAD, a screening questionnaire, is often normal in ME and CFS. And its the best of the bunch. some posts seem to give a totally daft view of ME and CFS and the current mess. I'm not communicating well.
     
  10. akrasia

    akrasia Senior Member

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    I am participating in the ongoing CDC study. For the most part, except for the presence of Lenny Jason's contribution, which stands out as an example, in this context, of apollonian clarity, easily spotted by those with eyes to see, it's filled with tendentious nonsense that sounds almost identical to what Bob just posted.

    It is an argument for political awareness, the necessity of knowing "what" they're looking for and the assumptions driving the construction of these linked questionnaires. One of the more interesting participants at the FDA meeting was the woman who constructed questions for various diseases, how important it was to listen to patients before creating something rather than using strategies that don't accurately measure what they are purporting to measure.

    I hope a substantial number of the people participating in this have a keen sense of how some of the questions are freighted with prejudice and answer accordingly. Similarly, in an illness, known for its remitting relapsing nature, answering using the worst interpretation of physical symptoms is prudent and renders a more accurate picture of what's happening. Here, these sorts of questions play on people's denial, their natural reticence not to "complain," and a genuine desire to think optimistically. When I answer the questions, my own history, and the history of the disease is foregrounded, as it should be. These are not innocent questions.
     
  11. Bob

    Bob

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    Hi Ellen,

    A friendly observation...

    If coming onto a CFS/ME forum to state that SW is actually a terribly nice chap, and that members of the CFS/ME community are wrong to question his motivations, then (whether you are right or wrong) you should expect to provoke a heated debate.

    And if, in the same breath, you are raising the prickly issue of ME vs CFS, without fully acknowledging the intricate cultural, political and scientific aspects of the issue, or without fully explaining your reasoning in a sensitive way that won't offend people who may not be aware of all the myriad issues surrounding the subject, and without being prepared to patiently discuss in detail all aspects of the contentious issue that you raise, then you should also expect to provoke a heated debate on this issue.

    Not quite sure who that is directed at, but it appears as if you are insulting the entire forum in one sweeping generalised comment.

    .
     
  12. user9876

    user9876 Senior Member

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    There are issues with the HADS scale.

    For example James Coyne has recently published about them.
    http://www.plosone.org/article/info:doi/10.1371/journal.pone.0070975
    talks about the cultural nature of the scale and a different letter refers to a study suggesting its not a great tool.
    http://share.eldoc.ub.rug.nl/FILES/root2/2012/HospAnanD/Coyne_2012_J_Psychosom_Res_2.pdf

    I've not read throught the full papers they refer to. I think that a different questionnaire is now recommended but can't find a link at the moment.
     
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  13. EllenGB

    EllenGB

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    I didn't criticise the whole forum but have noted the pointless personal attacks and I've had enough of the latter to last me a lifetime. I didn't have an issue with opinions, just facts. I referred to studies. The HAD is superior to other screening tools. One person may not agree but on the whole, it's probably the best there is. When we used it in the 90s, patients had no problems with it. BDI has more problems. Bob, we agree to disagree. But I won't take part in discussions with weird allegations and conspiracy theories. Been there, done that.
     
  14. Valentijn

    Valentijn Activity Level: 3

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    Any questionnaire which equates physical and cognitive disability with depression and/or anxiety is inappropriate for use with patients who have a chronic and systemic illness. I don't enjoy doing the things I used to do, but not due to depression - I simply can't do those things anymore! Now I enjoy doing things which I am capable of. Sometimes I can enjoy a good book or TV show, but not if I'm having cognitive problems or have crashed. Etc, etc.

    The questionnaire is completely inappropriate for use with disabled patients. There's no reason that these people can't use a questionnaire which simply asks how you feel, instead of assuming that all limitations are the result of depression. But they persist in assuming that we will deny any psychological issues, and must be tricked into revealing how we really "feel".
     
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  15. Mark

    Mark Acting CEO

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    Hi Ellen. Unfortunately I haven't been able to follow the whole of this discussion in detail as I'm not well at the moment. But since you're new to the forum and you mentioned personal attacks I thought I'd better point out the Forum Rules in case you haven't read them yet. If you do experience any personal attacks here, whether in forum posts or in private conversation, we do strongly encourage you to report them (using the Report link below every post) rather than responding to or referring to them. There should be no need to mention or discuss personal attacks because if there are any, and they're reported, we'll deal with them. Thanks.
     
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  16. EllenGB

    EllenGB

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    Last try. This scale was developed for those with medical diseases and the case cut off point reflects the understandable depression. A score of 11 or so may suggest clinical depression. 8 or more is possible depression. you don't rate if you are feelig cheerful or not but how cheerful, or not. You need to fele very down to score highly enough to indicate clinical depression. One item is a problem for CFS so I used to analyze data with and without the item. Other instruments ask about symptoms like dizziness, fatigue etc. Now that is misleading. Many studies find no higher scores on the HAD in the ME patients. The HAD doesn't equate physical and cognitive disability with depression. Depression is a failure to enjoy doing things. It's beign i a dark place and having lost control. We talk of hypo or anhedonia. That's clinical depression. If you can still enjoy things in different circumstances like disability, you're fine depression wise. Screening tools have their uses. If CBT does not lower HAD scores, there is something very wrong and quess what? It often doesn't in CFS studies. Friedberg and Krupp was interesting i that respect. CBT works for fatigue and that's about it. and Cohen's d values tend to be small to modest. Rarely large and significant.
     
  17. peggy-sue

    peggy-sue

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    Perhaps the dexamethasone supressor test would sort things out properly.
    At least it's proper a lab-based test. :p Gets it out of the psych's grubby mitts!
     
  18. user9876

    user9876 Senior Member

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    As I understand it there are two areas of critisism of the HADS scale.

    The first is due to the factor structure underlying the scale and the different anxiety and depression elements that suggest it doesn't have discriminative power. One paper seems to compare different techniques for analysing the scale, still reading the paper but I think that essentially factor analysis seems to suggest its suggest its ok but when taking an approach using item response theory then some issues emerge. As I understand it Item responce theory doesn't assume that all questions are equal but I've not gone through the theory to understand the details of how they fit a model to the questionnaire. One of my big worries about using questionnaire data is this assumption of equivalence between questions. Likert of course avoided the question by insisting that all questions were basically equally scaled around the same concept.

    The other area of critisim which is around the language used and the cultural sensitivity but equally there could be other contextual sensitivity such as disability. I know from when I worked with a psycholinguist the importance of how things are phrased etc. So for example "I still enjoy things I used to enjoy" is an example where an increase in disability may lead to an answer. It may be as you suggest that the threshold means that this isn't relivant but it can lead to scores being pushed up and perhaps some unhappyness being treated as clinical depression or where mean scores are quoted in a trial it can lead to misleading overall values.

    I also think there is a difference between a questionaire being used in a clinical scenario where answers are discussed and explored (I assume) and one used in a research context where scores are just collected and inferences made.
     
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  19. akrasia

    akrasia Senior Member

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    In this morning's Daily Telegraph, there was an article about a debate with the UKIP whose representative argued that women should not be on companies boards of directors because they lacked an aggressive, competitive instinct. He supported this by pointing out that women were not champions in chess, bridge, or poker.

    Claire Gerada, Simon Wessley's wife, and a supporter of his views (see youtube for her participation in those egregious videos on m.e.) was there and shot back that the UKIP fellow was being "disingenuous," that the argument was sexist and not a question of simple observation. Ok, fair enough.

    This is exactly what people with m.e. have been saying about Simon Wessley. He is disingenuous, and has used a variety of sophistic tactics to deflect attention from the public health crisis that m.e. represents. That he serves a corrupt short sighted medical bureaucracy, and is its tool as Esther points out, doesn't mean he's less culpable. What sort of doctor, who has any regard for his patients, would grandstand and spread the lie that m.e. patients are terrorists, even if he "disingenuously" qualifies it a small minority.

    His demeanor is a seduction, his claim on being a scientist is risible. Compare his work and approach to Dr. Jonathan Edwards and Dr. Mady Hornig, who says:

    "It’s very difficult in my mind to make this a psychological disorder. We do patients a disservice if we focus solely on secondary phenomena of being disabled or being unable to carry on life to your capacity – that shouldn’t ever be viewed as being the primary problem.”

    Dr. Hornig is a psychiatrist.
     
  20. alex3619

    alex3619 Senior Member

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    The fallacy of begging the question can, I suspect, be spotted when the assumptions made strongly determine how you interpret the evidence. If I presume ME is physical, I can easily interpret these psych questionnaire answers as supporting ME as a physical disease. Similarly if I presume ME is psychiatric, I could interpret the answers as supporting a psychiatric conclusion. The questionnaire does not discriminate between the two interpretations: that is in the bias of the interpreter. So in a very real sense these questionnaires are of little value unless interpreted very very carefully.

    So how do you differentiate between the two views? Hard objective evidence. So far the ME is psychogenic proponents have close to none supporting their view, whereas the biomedical proponents have a very great deal of objective evidence. What objective evidence there is about CBT and GET show one thing: clear objective evidence of improvement with their approach is almost completely lacking. They fail to disprove the null hypothesis. If this were held to the same standard as most of science, then the PACE results would demonstrate a failure of their hypothesis.

    Statistical analysis is subject to GIGO: garbage in, garbage out. The numbers still have to make sense.
     
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