Discussion in 'Latest ME/CFS Research' started by V99, Jul 28, 2010.
I'm at a loss for words that aren't rated R for obscenity.
It's a term the CDC CFS team use - I don't think any other team use it.
It should be "insufficient symptoms or fatigue". It means that they could not be described as well in the following way: They have one or more symptom out of fatigue or the eight other CDC CFS symptoms but don't have enough of them to satisfy the CDC CFS criteria.
If one looks at Table 2 at: http://www.pophealthmetrics.com/content/5/1/5 one can see how the ISF came to be formed in terms of breakdown from initial screening call.
Good job ferreting those out, CBS!
That's what I was wondering. Journal of Psychotherapy and Psychosomatics? They probably call upon some of world's experts in the field, like Simon Wessely and Peter White.
Ever wonder why it's necessary for the ethics and advancement of science for the peer-reviewers to be anonymous? I think they should have to list the names of the reviewers the same way they list the names of the authors. And they should have to declare any conflicts of interest, too.
I was thinking that we should ask the CFS Advisory Committee to address this. There are so many holes in this research, and I think it's within the charge of the CFSAC to address the way the CDC is prioritizing its research. This is what they're spending the paltry sums allotted to ME/CFS on. Lenny Jason is a psychologist, right? Maybe we could ask him to point out the fallacies and ask the CDC to account for them. At least that would get it on the public record.
There should be SOME way to not let this go unchallenged. Somehow I have a feeling that the time for just ignoring them with a "sticks and stones" attitude has passed. I'm with dancer and her Patient Anti-defamation League. Maybe we need a patient advocasy organization...
One thing I like about biomedcentral.com journals is that one can generally see the pre-publication comments including the names and comments of the peer reviewers. For example, one could see James (Jim) Jones laying into Maes and Twisk with their recent paper at: http://www.biomedcentral.com/1741-7015/8/35/prepub .
As well as the fact that this was done by the CDC, there is another reason unfortunately why it might be seen as particularly important: it is a random digit population study.
Other studies can be dismissed as not having unrepresentative samples.
Not that I really believe this is a representative sample of CFS patients - I think the empiric criteria (Reeves, 2005) are rubbish - but it can be quoted by others as a more definitive CFS study than others.
Thanks, Dolphin. That explains what they meant, odd as it seems to me.
I know I'm especially fogged tonight, but the idea of having "CFS" patients, and part-CFS(??) patients in a study.... it just sounds nuts. Are they leading up to creating a spectrum illness.....?
Point of information: this was first received by the journal on August 9, 2009. When WCR was still head of the program.
In quite a lot of studies one can see "chronic fatigue" being discussed. Sometimes chronic fatigue and chronic fatigue syndrome are combined e.g. "fatiguing illnesses". This is somewhat similar to that - but nobody else does it. Like you say, it's a bit like creating a spectrum of illness. Some/many of the CBT School of Thought (aka the Wessely/Sharpe/White/Chalder School of Thought) would see CFS as being on the end of a spectrum of fatigue with not necessarily a huge qualitative difference between what is wrong with people (i.e. people with CFS are no different to other people with fatigue). I don't agree with that.
What, so CFS patients are just people with fatigue only crazier? Or maybe we're just more skilled at somatisizing our illness so that we can show neuro-immune symptoms and infections?
Honestly, with this and Tina's latest news, my mind is screaming at me that I have to be asleep and in a nightmare. This is just so crazy-scary.
I almost didn't post this because I'm so unsocial. LOL. I couldn't help but google Personality Disorder Test and I would LOVE to now how Reees would answer these questions. Here they are, the thought of his answers makes me laugh and feel better.
Do you find yourself unaffected by criticism?
Do you often see things in black and white terms? In other words, something either is or it isn't, with no gray area inbetween?
Have other people accused you of being cruel to animals or people?
Do you often get stuck on the details while missing the larger picture?
Do others accuse you of being rigid or stubborn?
Do others see you as being cold and distant?
Do you tend to choose jobs that are below your skill level?
Do you tend to lie a lot?
Do you have a difficult time relating to others?
Do you find yourself exaggerating your achievements to win the respect of others?
Have others accused you of being arrogant?
Are you often critical of weakness in others?
Are you often uninterested in the feelings of others?
Do you sometimes profit at the expense of others, without being bothered by the pain or damage you may cause them?
Do you frequently reassure yourself that you are deserving of praise?
Not to mention health and disability insurers (who use just this type of testing and reasoning to deny benefits to seriously disabled patients) who will eat this RQBS up, legislators who make federal research funding decisions for ME/CFS, judges who make disability decisions, and the general public.
It's just perverse at a fundamental level that the ostensibly venerable CDC, ostensible protector of the nation's public health, made a deliberate budget decision to spend the pennies of federal funding allotted to ME/CFS and the labor and time of government-paid "scientists" to publish a study like this.
My problem is not only that this is a ridiculous study (thank you to all of you who have so eloquently pointed out the many reasons for its ridiculousness), but that CDC (or this little slice of it) apparently has no awareness of the clout and presumption of authority it has with the medical profession in the US and around the world when it comes to this disease, and the very real consequences its every action concerning ME/CFS has on all aspects of the already substandard quality of life of ME/CFS patients (in terms of quality (if not absence) of medical care, addressing financial burdens due to inability or limitations on ability to work due to disability, and lack of understanding by society at every level - friends, family, potential private donors to research/advocacy, employers, tax authorities, insurance companies, etc.).
Doesn't someone, somewhere in the government realize that on top of pouring precious (for them, for us) federal dollars down the drain, a CDC study like this causes affirmative, tangible downstream harm to very sick, financially-strained, formerly very productive (and potentially very productive in the future if this disease is treated properly), fellow humans for the reason stated above? Does that not matter in some kind of absolute moral sense?
I know all of this is more than obvious to us (and it seems like all one can do is laugh at how bad it is - I do think a sense of humor is required to cope with BS like this), but I also believe that it's not at all obvious to anyone outside the ME/CFS community, and that is why I think it's important for us to spell it out like we've been doing here: all aspects of why this study is extremely flawed and why it is affirmatively harmful.
Thanks for everyone's articulate comments and special thanks to CBS and Dolphin for pulling up those other studies and for working on a letter.
Needless to say (?) I agree with this.
Introversion vs. Extroversion
I'm not a psychologist but have done some reading on personality in the past.
According to the MBTI personality test, which is widely used, introversion and extroversion refer to whether people are energized by being around groups of people vs. being alone or one-on-one. It does not refer to whether you are shy or outgoing. Someone can be outgoing when they want to be but find it tiring to keep up; thus they are an introvert. On the other hand, someone can be shy but once warmed up, are energetic around groups of people; thus they are an extrovert. It is a spectrum - most people are blends of both. The MBTI also does not make judgements about whether introversion vs. extroversion is bad or not; it's simply the way people are.
I have not read the CDC paper though so they might be using extrovert and introvert differently.
I've been looking at claims around 'personality' in 'CFS' and the judging of rational or understandable human responses as 'maladaptive'.
I think the very fact that the CDC is spending money studying so-called "personality disorders" at all in CFS in 2010 is a problem. One would think they would be past that by now, and that the money would be spent on research that can lead to discoveries that can lead to non-psychological treatment.
I also think the use of testing that purports to objectively determine "the way people are" in CFS can only harm us, the premise/inquiry of a study based on such testing can only be that some specific personality profile is somehow correlated/causative, and the practical implications to be drawn from that ranges from the disease was the person's fault, to the disease is psychogenic and can be effectively reversed by psychological or psychiatric interventions. Even if, on the contrary, they show that people are more neurotic, for example, about their finances because they got sick and not the other way around (I know I was very lax about my finances when I was able to work and now I am much less laid back about things like my finances out of necessity), how does that help us discover effective treatments?
(Hope123, this is not directed at you BTW -- your post just made me think of more seemingly obvious to us-but not to others-points)
Outrageous - back to the Middle Ages and mass hysteria. And what is a "personality disorder" something that could well be levelled at many outside the ME community.
I wrote this letter after being on a different CFS/FMS website and then reading this thread and becoming very upset. I sent it to the following e-mail address: email@example.com. I would like to send it to someone more specific, but I can't find any other e-mail addresses. Does anybody have any more specific e-mail address I can send it to? Also, this is off topic, but does anyone know what can be said or done for this girl to help her?
I just got done talking to an 19 year old girl on a CFS/FMS support website. She has been diagnosed with CFS. She told me and other members of the group that her family does not believe that she is really sick because of information they found on the CDC website. Consequently, her dad has been hitting her, telling her she is just lazy and useless, and may kick her out of the house. She is very sick and has no where else to go. This young girl is suicidal and I do not know what to do for her. I can't tell her to be patient because treatment and attitude towards this disease will get better when I don't believe that myself.
Below are some "psychological studies" once again conducted by William Reeves in which Mr. Reeves once again claims we are a group of mentally ill, maladjusted people. I am going to tell you what is obvious to us, but for some reason, has been so difficult for you to understand---- If we are depressed, it is because we are sick and in pain. If we are lonely, it is because we are too sick to leave the house. If we are extroverts, it is because misinformation about our disease is easily accessed on the CDC website. Our relatives, our friends, and anyone else in our life have left because they read your website and your reports and are led to believe this disease is our fault. Our doctors won't treat us. You have labled us maladjusted and our behavior maladaptive and; thus, it is assumed that we are lazy, selfish, self-centered people who are lying about our illness and could change if we really wanted to.
What is it going to take for you to stop doing this to us? A lawsuit perhaps? Maybe a class action suit is the direction we need to go in.
Many of us are infected with XMRV. Why don't you put as much money and effort into researching possible pysiological causes for this disease as you do on your psych tests? What is it going to take to get you to move in a more responsible, productive direction? How many more young girls are going to kill themselves based on your actions and words before you change your ways?
PS I may have overdone this some because I was really upset when I wrote it. Please let me know if something needs to be changed.
Yes - this is the key point for me. If we took no interest in the reality of the situation they found themselves in then I expect that all oppressed, suffering or badly treated groups of people would be assessed as psychologically abnormal, and this could then be claimed to be a risk factor that caused their own suffering. What a terrifying way a de-legitimising their concerns, not through debate or argument, but by undermining our prior commitment to engaging in these debates with a presumption of a equality and mutual respect.
It would be fair to assume that gay people in Iran are rather less extrovert than others - if they just came out of their shell a bit maybe they wouldn't be so inconveniently sexually deviant?
If anyone has access to the full paper or a copy of the personality quiz, I'd be interested in having a look and seeing if I could add anything to any letter.
Even if the full paper is more reasonable the presentation of the abstract could be legitimately attacked on its own (I don't know if the journal would care though) - these things matter, and the way CFS papers are spun causes a lot of damage in the way patients are treated.
In my opinion, for what it's worth - The biggest problem arises from ME and CFS frequently being touted as the same thing. In fact there has been a marked swing towards prioritising CFS with ME frequently tagged on as an afterthought. ME is a condition of which CF is only one of many symptoms. As we already know, CF can be attributed to numerous illnesses but, despite this, the likes of Wessely and co and the proliferation of unproven training 'treatments' merely adds weight to the psycho based trend.
I would be interested to know precisely where the World Health Organisation stand in all this. They have classified ME as a neuorological disorder but this appears to count for nothing as the psychobabble brigade gain momentum.
'Personality Disorder' - Cheeky b******s. Presumably, this 'diagnosis' would allow any understandable frustration/spleen-venting to be dismissed as a 'personality' issue. So much easier and cheaper than actually researching possible bio-medical causes.
Apparently, a UK University is currently researching whether 'snails have an inbuilt sat-nav system'. Only one, I'm sure, of many similar pointless exercises (unless you are a snail, of course. Even if you are a snail, it's not as if you actually do a lot of travelling) How reassuring to know that some of the finest brains (allegedly) are applying themselves to such important matters.
Perhaps we should start a Thread listing totally pointless research programmes.:Retro smile:
This has been discussed on UK-based lists for group leaders before: should groups agree to any and every questionnaire study that comes in.
The answer for many people, including me, is no - many studies aren't likely to help us much but could quite easily harm us.
Often one should at least for another "unhealthy" control group like a group with Rheumatoid Arthritis or Multiple Sclerosis but even that often does not make the risk worth it.
Another problem is that such research is so relatively cheap that there can easily be lots and lots of questionnaire research done. That's why one often hear calls for biomedical research.
You can also try a Google Site Search
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