New Survey on CFS Risk Factors

Kati

Patient in training
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On the question pertaining to whether we've been diagnosed by a doctor- it's a yes or no, but what if the doctor used no criteria at all, doesn't know about PEM and OI but still is convinced it's CFS? I don't think the doctors know any more even if they diagnose people with CFS.
 

Angela Kennedy

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Hi, Angela.

Thank you for your comments. I agree that it is very difficult to quantify what I call psychological/emotional stress that occurred prior to the onset of a case of CFS. It's actually also difficult to quantify other types of stress (physical, chemical or biological). I have taken a certain amount of flak from some people over the past few years for even suggesting that stress, and particularly psychological/emotional stress, is a factor in the etiology of CFS. However, I've received detailed histories from a lot of people who have CFS, and I've studied the published risk factor papers, and I'm convinced that various stressors do play important roles in causing onset of cases of CFS. I listen to the people who have this disorder, and I take what they tell me seriously. True, this is a collection of anecdotal reports, but it gets to be a rather large collection, and over time I think it's valid to draw impressions from the general features of these reports that appear over and over.

Can I apply some sort of rigorous statistical analysis to this? No. But is this type of information valid to the degree that one can confidently base hypotheses for etiology and pathogenesis on it? I believe it is, and I'm not sure there is another way to do it for a disorder like CFS. Stress is an inherently difficult thing to quantify and analyze, but it's very real.

The CFS population is very heterogeneous. For some people, psychological/emotional stress doesn't appear to have been a significant factor, and those people seem to be the ones who become the most incensed if this subject is raised. I think it is a human tendency to start one's thinking from one's own experience, and that is normally a good place to start. But if a person is not able to go beyond this and entertain the possibility that everyone's experience is not the same as their own, I think their ability to get a complete picture of what is going on will be limited.

For other people who have CFS, pychological/emotional stress appears to have been a very important contributor, and after this topic has come up on a CFS board, they often write to me in private emails to tell me that, because they don't want to be criticized on the CFS boards for reporting that emotional stress seems to have been important in bringing about onset of their illness. I can't blame them for that, and I have appreciated what people have shared with me over the past few years.

I understand the sensitivity of this issue. People with CFS have been and are too often accused of being psychiatric cases. I certainly do believe that CFS is an organic, physiological disorder, not a psychiatric condition at its basis. But the fact is that the brain and the body are intimately linked, and the nonspecific stress response system responds to all types of stress, whether physiological or emotional, by producing the same hormones and neurotransmitters: cortisol, epinephrine, and norepinephrine. And when this occurs excessively and over long time periods, it results in oxidative stress and depletion of glutathione. That goes on to produce significant biochemical changes, and the resulting illness is very physiological, regardless of what types of stressors originally brought it on. And having this illness certainly can affect a person's state of mind, such as by producing depression as a result of the loss that has occurred and the difficulty in maintaining hope that there will be a positive change. I think this is very understandable. But to conclude that depression is the root issue is just wrong.

Best regards,

Rich
thanks for your answer Rich.

I'm writing a little on the hop so hope this doesn't come out garbled. I also hope that my criticisms here are understood not as personal attacks on anybody, but only as a constructive (if negative sounding) discussion about the problems of 'stress' explanations. They certainly are not complete in their format here.

I think one major problem around 'mind-body' issues is the lack of clarity in the language of people claiming psychogenic causation for an illness like 'CFS', which stress explanations often utilise.

So, for example, 'Brain', which is after all part of the 'body', becomes incorrectly synonymous with 'mind' (an abstract term). Then metaphysical constructs (beliefs, lies, delusions) are proposed as causing organic illnesses to absurdly increasing degrees, where they are not just euphemisms for 'hypochondria' or 'malingering'.

Another problem is the belief that, because somatic (bodily states) MIGHT affect one's 'state of mind' (whatever that means- and this would necessarily be a complex and sometimes unstable construct), people assume vice versa is also the case, per se, which is a fallacy in reasoning.

These are only some problems, in addition to the ubiquity of 'stress', which make the 'psycho-social stress causes CFS' claim very unsafe as an assumption.

So we have to be very clear what we are talking about. Scientists at the very least should be writing more tentatively, ESPECIALLY in light of the heterogeneity of what gets called 'CFS'. But even you didn't do this in your presentation. You generalised.

Also ATTRIBUTING one's illness to stress does not mean it is correct, period. We do have a special problem in that psychotherapeutic discourse, which pervades much of Western discourse, is often taken up uncritically, even by patients. True, those of us who believe ourselves (or in my case, loved ones) illness was NOT caused by psycho-social 'stress' might be accused of an uncritical take-up of 'biomedical' discourse, but as a natural scientist, I would hope you weren't assuming that this is the case with people who have trouble with the 'mind-body-stress' claims. It is too easy to blame those of us who do as somehow over-generalising our own experience, but the matter doesn't go away - stress is a ubiquitous human and other animal experience, and therefore impossible, certainly at this time, to elucidate as a causation of an illness like Canadian defined ME/CFS, for example, or, for that matter, cancer.

And to return to my little joke about star signs, I was actually making a serious point. If people wrote to you and attributed their illness to their star sign, or to something they did in a former life (bad karma), you might be more sceptical than if they tell you they were 'stressed'. Despite the enormous problems in psycho-social 'stress' explanations for illnesses such as Canadian defined ME/CFS, there is still an almost quasi-religious attachment to the concept, to the point researchers write with certainty and authority on these issues where there should be none. Unpicking the tangle of problematic assumptions about 'stress' in 'CFS' is important, nevertheless, even if it is discomfiting for patients and researchers alike.
 

xchocoholic

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This looks like another bogus CFS study to me. Do you remember the infamous phone survey the CDC did a few years ago ? Seriously, why aren't they looking for what information we know already about this DD ? Viruses, PEM, excercise intolerance, toxins, candida, celiac, nutritional deficiencies, etc etc etc ... We should do our own survey ...

As for this DD being related to stress ... If stress were a factor, all mothers, especially those working a full time job, would have this DD. Lack of sleep and taking care of kids after working all day is tiring physically as well as emotionally. Not to mention all those people in co-dependent relationships with an unreliable or sick partner ... or anyone working in a stressful job such as in the ER.

I understand some of us thinking that stress was a factor but most of us had no idea what little clues our bodies were giving us before we were body slammed with this DD. I ignored my IBS, hypoglycemia, mild seizures and candida symptoms because I didn't know any better. Now I realize how much these had to do with my overall health and possible demise.
 

Angela Kennedy

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This looks like another bogus CFS study to me. Do you remember the infamous phone survey the CDC did a few years ago ? Seriously, why aren't they looking for what information we know already about this DD ? Viruses, PEM, excercise intolerance, toxins, candida, celiac, nutritional deficiencies, etc etc etc ... We should do our own survey ...

As for this DD being related to stress ... If stress were a factor, all mothers, especially those working a full time job, would have this DD. Lack of sleep and taking care of kids after working all day is tiring physically as well as emotionally. Not to mention all those people in co-dependent relationships with an unreliable or sick partner ... or anyone working in a stressful job such as in the ER.

I understand some of us thinking that stress was a factor but most of us had no idea what little clues our bodies were giving us before we were body slammed with this DD. I ignored my IBS, hypoglycemia, mild seizures and candida symptoms because I didn't know any better. Now I realize how much these had to do with my overall health and possible demise.
Yes, and indeed, because of the ubiquity of 'stress', other explanations are being resorted to, like 'perception of stress' and the big one 'negative affectivity', which often leads to "some people can't cope with stress - they're too negative- they're neurotic- and that's why they're ill" explanations for somatic illnesses.

Add to that the situation that, illnesses with uncertainty in aetiology, leading to the erroneous label 'medically unexplained', are more often given psycho-social 'stress' explanations, and we have one tangled ball of string there.
 
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That was the biggest waste of time, in a day in which I don't have time to waste. I've been sick for over 25 years. Nothing, absolutely nothing, current has an effect on that at all (some MCS but it started then!). I can't imagine it added anything whatsoever to any research.
 

cfs since 1998

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I seriously don't like the idea of a "Risk Factors" survey. It makes it sound like it's OUR FAULT for being sick and the implications of questions like "how often do you drink alcohol" are offensive. Also there is not even a question asking how long you have been sick, rendering almost all of the questions meaningless.
 

rebecca1995

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Jennie,

Thanks for posting the link to this survey. Would you be able to clarify for us who wrote it?

Was it written by a medical doctor? If so, what is his or her specialty? Does he or she see ME/CFS patients in his or her practice? Or is he or she a researcher?

Was it written by a PhD researcher?

Was it based on other surveys or published research on ME/CFS?

Was it written by Ms. McCleary?

What I'm trying to figure out is the scientific basis for selecting these particular questions as opposed to the hundreds of others that could have been chosen.

The XMRV+ Survey, written by a group of people from this forum, is clear in its "Who We Are" section about why it asks the questions it does.

I apologize if the answers to my questions are available on the CAA website; I was unable to find them.

Thank you.
 

Cort

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I think it is odd that the questionnaire does not refer to the time when you got ill.

There are lots of questions on possible toxin exposure - drinking water, gas in garage, garage connected to house, heating system, mold smell, farm/ranch

Pathogens - blood transfusion, pets,

Some questions are just standard questions that all risk analyses ask. I'm getting questionnaires from researcher to help with the patient data repository project and some of the questions are just weird - but that's because they are standard questions and they help you to compare different groups with each other.

I wish I remembered more questions - some I thought were odd and some not.

I really didn't get the risk factors approach- but asking for present day data. That was strange. I wonder if it was just a really poor title but it was confusing.... at least they're getting good feedback..... :)

BY THE WAY
- a little plug for the Phoenix Rising patient Data/Treatment Review Project. We're looking for input on the symptoms, test results, treatments, supplements, etc. that CFS patients have/use. If you buzz down to the WIKI -click on Patient Data Repository and then click on an area you can add your elements to.

Example click on Supplements - then click on Edit and add supplements that you use to treat CFS.
Click on Tests - then click on EDIT and add positive test results, etc.
 

rebecca1995

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Thank you, Jennie! That link does provide more information about CAA surveys. It doesn't say who writes them or where the questions come from, but that info is probably not worth anyone's energy to track down.