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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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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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    We have a body and a soul. You can't validate someone's thoughts and feelings. You do the best you can to relieve distress. If you insist on a biological correlate before you help, you leave a lot to suffer. So that's where education, lots of experience and wisdom comes in. Stress, or distress, can be assessed, as best as we can at the mo, using a combination of measures, including my favourite, the Perceived Stress scale, plus four cortisol measures per day (saliva) and asking people about how they feel. If you compare patients with high scores for stress with those with low stress, you can get an idea what is linked to stress and what is not. You can do a test, e.g. measure cortisol before and after an exam, or follow carers of people with dementia over years. Statisticians can partial out the effect of stress. We've obtained quite a lot of info on the effects of distress that way. Abuse during stress is associated with increases in certain cytokines years later (Danese and others). We don't know why, but that kind of finding has been replicated. Sex abuse is not good for your health. Ergo, Heims' findings. Did the stress from the abuse mess of the immune system? Jason has a kindling theory. But stress does have a pro-inflammatory effect. If you want pure science, you study maths. When feelings are involved, you have to look at things in a number of different ways and hypothesize and test.

    Depression can shrink the hippocampus, stress can decrease grey matter volume (and CBT can increase it), so neuroscience is interesting. But there's always the possibility that the reduction in grey matter volume is the result of a disease process. If you don't remove the individuals with stress, you can't interpret the findings. Scanners are a great help. Costa et al showed that ME is linked to hypoperfusion of the brain stem and ME plus depression to almost normal blood flow (as depression itself increases blood flow). So you need pure groups. Acute stress is linked to high levels of am cortisol; chronic stress/burnout to low levels. but not in everyone as different patients cope with stressors in different ways and at diffferent times. That's why five years plus one to get Europsy certification is very basic.

    As we are body and soul, I can't see many disorders that have one physical cause (exceptions include norovirus and salmonella). With stomach ulcers, there's H pylori and yet, stress also plays a role. Heart disease is a result of many factors, as is breast cancer. Severe distress can result in a relapse in someone who has already had breast cancer. It's all very complicated. Short answer: no, you try and use reliable measures and so on but some aren't as bothered as I am. I am a nitpicker. There's a lot I don't know. I do know that kindness is a great antidepressant.
  2. peggy-sue

    peggy-sue

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    I do not have a soul or a mind. (which is merely an illusion of consciousness, as is free-will.)

    I have a body, which has a brain. I am not a dualist.
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  3. Esther12

    Esther12 Senior Member

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    I don't think that the evidence is that good for some of those BPS claims. eg The research linking stress and cancer seems to have unravelled somewhat. The study that claimed to show CBT increased grey matter value for CFS patients had no control group. I'm open to the possibility of emotional problems leading to tumours and what-not, but it seems that there was a trend from 1990-2005 for people to make rather exaggerated claims about this stuff, and that a lot of them are now being debunked.

    Also, with child abuse affecting physical health this does seem likely, and there's some evidence from a few different conditions indicating that this is the case... but the evidence isn't overwhelming. For CFS, a lot of it depends on retrospective reports, and it could be that people who are suffering are more likely to consider their childhood as being abusive than those who are healthy and doing well. I think that there are other possible confounding factors too.

    I had been more accepting of claims about this stuff before looking at some of the research, and realising how weak a lot of it was.

    Sorry for just chipping in from the side, without really joining the discussion properly, but this thread is moving too quickly for me to keep up. Also, while it's entirely up to those involved, as the discussion seems to not be about the Maddox Prize, it could be worth starting a new thread with a relevant title so others can have an indication of what's been discussed.

    edit: Coincidentally, I just happened to be reading a brief piece from Coyne which touches on some of these issues, and includes a link to slides from a presentation he gave on it. I thought Id come back and edit in a link: http://jcoynester.wordpress.com/201...ing-demise-of-the-psychosomatic-family-model/
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  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    This thread seems to be going around in circles.

    What me or cfsers dont agree with is that depression is a cause of cfs/me, if this was the case then antidepressants would cure or greatly improve our health. I think what we can all agree on is that depression is a secondary affect of cfs/me. Who wouldnt feel depressed living a life feeling like crap, i suppose this can add to the fatigue and some symptoms we have. Depression is but a piece of this big puzzle but this one piece is what alot of docs and psychs seem to focus on and its a secondary issue.

    Depression issues in cfs/me i think are worth treating but i dont think we respond to treatments like someone with just depression. Many are sensitive to mediciations etc and many physical ways of improving our state of mental health are hard for people with physical issues. This illness is a life changing thing and i think it takes a while for many of us to cope with this and adjust our expectations. We need to find different ways to enjoy life that we wouldnt have thought of pre illness.

    At the end of the day if we could treat the cause of cfs/me then there wouldnt be any depression, unfortunately this doesnt work the other way. But in saying all this, it is a chronic issue and i think we could all benefit with improving our mental health in some way for sure. Its a secondary piece of the puzzle.

    cheers!!!
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  5. WillowJ

    WillowJ Senior Member

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    Raynaud's is a syndrome. It's clearly recognisable and not easily mistaken for something else.

    I don't think it's entirely accurate to call CFS a syndrome. This is a failure of norms of diagnostics and nomenclature.

    (two of the more recent studies showing a failure of diagnostics here:
    http://www.meresearch.org.uk/information/publications/misdiagnosis-on-a-grand-scale/ )

    Merriam-Webster defines syndrome as:
    "a group of signs and symptoms that occur together and characterize a particular abnormality or condition"

    There is no CFS definition which defines a particular condition. Thus, not a syndrome.
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  6. biophile

    biophile Places I'd rather be.

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    How about CFEW pronounced "see few", chronic fatigue etcetera wastebasket?
  7. WillowJ

    WillowJ Senior Member

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    lol, but what's wrong with ICF?
  8. Valentijn

    Valentijn Activity Level: 3

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    I've been thinking about this some more, and to some extent you are right. HADS has good points in that there's relatively high cut off points, which allows for some of the symptoms to be attributed to physical illness rather than depression. I think there was one in particular that was horrible - General Health Questionnaire?

    Unfortunately, the HADS does get misused, such as in a ME/CFS study looking at 11-18 year olds, and redefining "depression" to correlate with a score actually in the "possible depression" range. So one reason I dislike HADS is because it's more vulnerable to that sort of misuse, due to physical and cognitive symptoms being counted as indicating depression.

    But while HADS might work satisfactorily for the purpose for which it was developed (assessing depression and anxiety in sick people at hospitals), it certainly was not developed to be used on untreated and unsupported patients with chronic and multi-system illnesses.

    For example, someone with a typical problem requiring hospitalization might have two or three symptoms, which are the ones being dealt with at the hospital. So someone with a broken leg and no psychiatric issues might score a few points due to those limitations, but still be far from being diagnosed with depression or anxiety. But another patient who also lacks psychiatric issues, but has many severe cognitive and physical limitations, has a good chance of crossing the threshold into depression as assessed by HADS.

    Taking HADS out of the hospital environment might also have an impact - the person with a broken leg, if at home and untreated for pain or or the break, is not going to give a damn about his or her appearance when they're trying to figure out how to just survive. But that same person, being appropriately cared for in a hospital with with pain meds and being fed and assisted, will be much more likely to care about and be able to put some effort into appearance.

    So while I think HADS may be useful in some circumstances, I think that 1) taking it out of the hospital 2) using it with multi-system illness, and 3) using it on untreated patients, all combine to make it rather problematic. And it doesn't help if it's used in a field (ME/CFS) where there's a small group of unethical researchers who will try very hard to find ways to abuse it.
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  9. Andrew

    Andrew Senior Member

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  10. peggy-sue

    peggy-sue

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    It might, but it is still only about treating psychiatric disorders in people with "ME/CFS".

    I really do not see any point in any studies about personality or mental health issues, or any other "psychological factors" any psychologist cares to pluck out of thin air and ME.
    I really haven't got enough interest or resources to waste my time and effort on them.

    It's not a mental health condition / illness. The studies are spurious and irrelevant.
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  11. Andrew

    Andrew Senior Member

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    The thread title is "Overlap between CFS and Depression?", not "How to Treat ME/CFS."
  12. alex3619

    alex3619 Senior Member

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    Hi Andrew , I have a lot of time for Ellie Stein. I met her once at a conference, and we talked for hours. Yet again she demonstrates that not all who are concerned with mental illness are blinded by the psychogenic fallacy. Alex.
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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Lets put the whole cfs/me is not depression but focus on treating the secondary depression many of us get.

    I know myself that full dose antidepressants make me feel sick and anything that increases noradrenaline over hypes me. very low doses of ssri's have helped and stop me feeling as bad about feeling like crap as i normally would. Dose like a 1/4 to a 1/2 of a 50mg zoloft has helped which many gp's would probably laugh at.

    During bad periods all many of us can do is lie down in a dark room with our eyes closed but when in a state of being able to function better, i do think TV is a great tool for us and probably over looked alot. I have said it before but i love sitting down and watching episodes of 'Cheers' and getting that belly laugh going.

    What do others do with their time when not totally out of action, something that they enjoy which doesnt burn them out?

    Pre cfs my thing was doing something sporty or lifting weight etc that was my hobby, so its been hard to find something that i can do that i enjoy to occupy myself.

    Im also interested in how people have been able to financially support themselves if/when cfs has had them change their jobs.

    I think everything i have mentioned above are things that can cause depression in many of us and dealing with them can eleviate this. A couple of million dollars would elviate my depression:thumbsup:
  14. WillowJ

    WillowJ Senior Member

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    EllenGB, I think I've not talked with you prior to my post above, and so I wanted to say welcome to the forum. I think it's good you're here and I agree with some of the things you are saying, like we should be more careful how we talk about psychology and psychiatry in general.

    I think we tend to get a little sloppy because we have been hurt by various things and because there are a few people (mostly, but not all, psychiatrists) publishing a lot of papers about "maladaptive coping" and "illness beliefs" being the most important factors in our disease when this doesn't fit our experience at all (besides having some methods errors like using healthy controls instead of another sick and disabled population) and also doesn't fit with the other research that's out there, and our doctors do refer to sites (e.g. CDC, Mayo Clinic, NICE/NHS) that publish the first kind of research and ignore the second, when they tell us they cannot offer anything other than CBT and GET.
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  15. Andrew

    Andrew Senior Member

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    I think the only
    Anti-depressants work differently on different people. I use Wellbutrin. It reduces my depression and I notice no side effect. But others have told me that Wellbutrin hyped them up and caused them problems.

    I got onto Wellbutrin by trial and error. A psychiatrist just tried one anti-depressant after another, to see if it helped and also didn't hurt. I think most of what we tried were samples, so they were free to me. And one thing I learned is to be careful how one stops taking a medication. Some of them have to be tapered off of.
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  16. Snow Leopard

    Snow Leopard Senior Member

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    Exactly right. First Chronic Epstein-Barr virus Syndrome, later just Chronic Fatigue Syndrome (1987) after it was found that not all patients had ever had EBV. But this is a placeholder and a historical accident.

    ME is also not very useful as evidence of Encephalomyelitis is not shown. Another historical accident.
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im not saying im right or wrong and this is to do with ebv but I initially got ebv with the life long antibodies in the early stages of cfs. Several years later I test totally negative. Now when I read oslers web I found this was a somewhat common occurrence with people from outbreaks in the 1980s. This may have something to do with our b cells. Now I mention this as ebv is something that keeps coming up in cfs and wouldn't totally rule it out. I have read that 95 percent of people have ebv by the time their 30yrs old so I find it hard to understand how cfs could be so different. Also a common finding is low nk function so having this would make us prone to chronic ebv reactivation.

    I just mention the above as chronic ebv may not be to far off the track but I do think if this is the case then it was a dam good fluke of the cdc to call it chronic ebv. We don't have all the answers but I wouldnt be saying ebv is way off just yet.

    Cheers
  18. overtrain

    overtrain Medical Mafia needs to die via this virus.

    http://www.bmj.com/content/333/7568/575
    Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study.

    EBV is one pathogen that leads to this dread "disease" or whichever nomenclature we use to point at the moon. EBV is why I'm here. Or, rather, locked in my house going on 2 years next month.

    .... I initially got ebv with the life long antibodies in the early stages of cfs....good fluke of the cdc to call it chronic ebv.... but I wouldnt be saying ebv is way off just yet.Cheers[/quote]
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  19. WillowJ

    WillowJ Senior Member

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    Dr. Chia found that EBV was a relatively less common cause in his study, which could be why the CDC found it hard to make the case. Many of his cases were enterovirus. He says it's up to others to replicate his work, now. Somehow we have lots of interesting studies but often lack replication.
    http://cid.oxfordjournals.org/content/36/5/671.long
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  20. overtrain

    overtrain Medical Mafia needs to die via this virus.

    Indeed, if less common, still a commonality.

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