Discussion in 'Latest ME/CFS Research' started by shrewsbury, Mar 20, 2011.
Anyone have a concrete answer for this? I would like to know!
I must be feeling a bit masochistic today, because I read the full text version, but this is rich:
They don't even pretend to be studying ME/CFS, just chronic fatigue (except in the abstract and title, which is all most people will read). But even for chronic fatigue, or any plain ol' everyday fatigue, their conclusions aren't logical. People who are fatigued don't exercise as much, therefore lack of exercise is a risk factor for fatigue. That makes as much sense as saying that paraplegics don't climb stairs as much as non-paraplegics, therefore not climbing stairs is a risk factor for paraplegia.
I love your analogy.
Indeed - and they've also provided yet more evidence (as if it were needed) that what they are very definitely and determinedly not studying is myalgic encephalomyelitis. They're not even studying chronic fatigue syndrome any more, but chronic fatigue instead - hence the increasing trend for the use of the term 'chronic fatigue' all over the place, dropping the 'syndrome' bit - all the other symptoms they require are things you can get easily from deconditioning and poor quality sleep. It's the inevitable next step for them, as things go from bad to worse for us, to broaden and broaden the definition and study all long-term tiredness as if it were one condition - a much simpler definition!
One of the things that jumped out for me was the figure of 2.3% of the total population suffering from their 'chronic fatigue'. The group they are studying is now approaching 10 times the size of the population with ME, and it's quite obvious to those of us with immune and neurological abnormalities that most of the people they are including under this ever-growing umbrella diagnosis don't have any of the characteristic symptoms that define our illness. If there really were that many of us around, it would be quite obvious to everyone that there's a very serious problem indeed.
Here's a nice little stat somebody might find a use for. Estimated UK population is 62 million. At a prevalence of 2.3%, by my calculation that would imply they are now saying there are more than 1.4 million people with CFS in the UK!!!
Er ? are you agreeing or disagreeing with what I wrote, your two responses seem contradictory. The study you link to doesn't define a gender basis for susceptibility to infection, rather it details a gender based differential in disease progression following infection.
In most cases androgens actually put males (all animal species) at greater risk of morbidity and mortality, although as with HTLV-I associated myelopathy/tropical spastic paraparesis and interestingly H1N1, there are infections in which morbity appears greater in (human) females. But higher morbity does not explain the XMRV (or any other 'single infection explanation of M.E/CFS) problem - if there are equal levels of infection of XMRV, but CFS is a condition in which women experience higher levels of clinically notable morbidity, then there should be a disproportionate number of healthy control males returning as XMRV positive results - to date there is no sign of that. If the data continues to support that position then it would have to be contended that XMRV is indeed a (uniquely) excess female susceptible infection.
Harsh tone no problem for me.
Does discussing anything here confer credibility ? And if so who is it that will be engaged by that credibility ?
My starting point is that if something is published in a reasonably credible journal then it is worth considering, no matter who wrote or why. To do otherwise is to deny the acknowledged process of science, which is to aggregate all pertinent information and make judgements accordingly. That researchers have biases is inevitable and the further in science one moves away from observational experimentation the greater the capacity for researcher bias to play a role - but if one accepts that epidemiology is valid and necessary then one has to accept the data , whatever the source and make of it what one can.
At a pragmatic level my view is that, no matter how repugnant one may find the work of some Psychiatry biased researchers, it is not smart for M.E/CFS sufferers to reject the work of those researchers out of hand, or to insult individual researchers. The creation of an image of a patient population that is vociferous and unreasoning, is a profound 'negative' for all future interactions between patients and researchers/medical professionals, many of the latter may well conclude that what was dished out to Professor X and Dr Y, may well come 'our way' if 'we' don't come up with something this patient group wants and simply steer clear because that propspectis highly unattractive. It's all very well haaving a few favoured researchers who are saying the right things, in the long run we need the involvement of of those who are saying the 'wrong things' but who are prepared to follow the science wherever it leads.
Psychiatry has many problems, and there are many more people with mental health diagnoses than there are CFS suferers, who are experiencing the inadequacies of this area of medicine. We may find it especially unpleasant to have gained the attention of psychiatrists because we believe that psychiatry has no part to play in supporting us, but the underlying problems extend far beyond M.E/CFS, and beyond a few individual psychiatrists. To achieve change will require systematic change in psychiatry as a whole, until that is advanced, Wessely, White etc will retain legitimacy because they are doing no more than extending 'normal psychiatric' practice' to M.E/CFS - attacking them for doing that will not gain sympathy at administrative or political levels. Ironically if M.E/CFS affected people really want to change the situation, it will require making common cause with those who have mental health diangoses in efforts to change the way psychiatry works.
There seems to be an element of 'straw man' to your argument IVI, because I don't know who it was that ever suggested that specifically the infection rate of XMRV was higher in women than in men. I also don't know who it is that has ever advanced XMRV as a 'single infection explanation' - certainly not the WPI, who have emphasised that there must be co-factors since the beginning, and who appear to see XMRV as 'necessary but not sufficient' - and certainly not the pro-XMRV campaigners, who are very much interested in the possibilities of 2-strike and 3-strike theories involving interactions with EBV etc. Indeed it's things like these highly suggestive interactions of XMRV with other known factors which have fuelled the sense that the whole hypothesis fits like a glove.
Absence of evidence doesn't mean very much in this context! We don't know anything about the gender distributions of the WPI's XMRV+ healthy controls - they might all be male, for all we know - but with a control rate of about 4% and a sample size of about 100, there's not going to be any statistically significant data there to go on anyway. And there's no other data from elsewhere to go on either - certainly not from people who haven't demonstrated any ability to detect XMRV in vivo. So there's no reason not to believe there are a disproportionate number of (relatively) healthy XMRV+ males, and I'm surprised you're suggesting we can draw any conclusions at all about gender distribution based on the absence of such evidence.
We live in an age where scientists are ever so fond of talking about what there is "no evidence in support of", but don't get sucked in to the illogicality and the use of this phrase as political spin: there is no scientific evidence at all, either way! And since there's seemingly no interest in doing any genuine research, either, we just have to make do with whatever partial reasoning and guesswork we can come up with, to fill the void and help us make the decisions we are faced with.
Anyway, what IS suggestive are the in vitro findings that XMRV replicates much more rapidly in the presence of hormones (especially oestrogen I think but maybe androgens also), inflammatory cytokines, and cortisol. That seems to fit well with the existing observations of a relationship with stress, chronic inflammation, abnormal levels of cytokines and cortisol in CFS patients (not to mention the immune abnormalities and correlations between what XMRV infects and what is malfunctioning in us, at T and B cell level), and most especially, in this context, the realisation that XMRV replicates more rapidly with hormones could easily provide an explanation as to why more women are diagnosed with CFS than men.
I still think that the nature of the gender balance of ME/CFS is very much still open. It could just be down to doctors' confirmation biases; they might be tending to give the men other diagnoses. But the known behaviour of XMRV in vitro does provide a potential explanation for the apparent gender difference: in men, relatively stable hormone levels may make it possible for XMRV to replicate relatively little, whereas in women, fluctuating hormone levels may make it virtually impossible to control replication. It even ties in with the common onset ages of teenage and mid-twenties...though of course, there's "no evidence" of those common onset ages either, in the absence of any science...just another area where we've no choice but to rely on anecdotal evidence, which is a far more reliable guide than most of the scientific evidence at the moment, IMHO.
Hmm...but are there any 'reasonably credible journals' though, I wonder? I certainly do emphatically deny the 'acknowledged process of science', based on the total garbage science I've read from the denialist camp, and especially gibberish like the PACE trial and other psych research, over the last year. It's brought the entirety of the scientific process into sharp relief, and its putting science into a similar crisis state to that which we see over the climate change debate and other areas of politicised science. People have seen enough BS now, that they don't trust science any more. The 'acknowledged process of science' will either undergo radical reform, or public confidence in science will die out. Unless science can regain its independence, and use the internet to foster a radically new kind of transparency, it will evolve into a mere ideological tool of repression.
This isn't terribly new for me: I work at a university, in admin, and many of my friends and colleagues are former academics who have left academia in disgust at the lack of academic freedom and the distortion of the research agenda by financial interests. Those left inside the system doubtless don't see the scale of the problem, but the smart people on the outside see a total crisis. How many times have I heard people tell me their privately-funded research was not submitted for publication because it reached 'the wrong answer', and that being privately-funded it will never see the light of day? Often enough to have no faith left at all in what the 'credible journals' tell me...
Researchers' biases are one thing. Systematic biases introduced by the changed nature of research funding and the dominance of powerful financial interests are quite another. Yes, we have no choice but to look at the data and make of it what we will - but with awareness of the direction that the powerful political interests skew the whole picture, we can reasonably expect to then have to shift the entire picture massively in the other direction, and disregard whole swathes of industry-funded research, in order to form a realistic picture.
I do still read stuff like PACE and all the other garbage research, but mostly with the perspective of noting what certain people are taking pains to tell us is not true, on the assumption that whatever they're taking pains to debunk probably is true. That's especially true of British science: when I read a big British study finding that there's no correlation between mobile phone use and brain cancer after all, I take that as evidence that there probably is.
I agree, and you explain well why that strategy isn't smart or productive - though it's a perfectly natural reaction. We do need to debunk garbage like the PACE trial through reason and careful analysis, but the problem then becomes: there are too few of us, we are too disorganised and challenged by our health, and the other side of the argument is hugely powerful, completely unprincipled, and controls the media completely on this subject: so the reasonable and scientific response doesn't work any more. We seem to be fighting a losing battle when we engage on those terms. It's a dangerous situation, because inevitably people will eventually find other ways to resist if the scientific and rational route is denied them.
Way cool! I agree totally with that. I think we all tend to be so focused on the illegitimate way we've been funnelled into the psychiatric camp that our response is mainly to try to get out - but it seems to me equally important to realise that the way our illness is mistreated is not unique, and that those with other mental health diagnoses are actually in much the same boat! Our experience should cast a spotlight on the field of psychiatry as a whole and make us realise that we are in many ways just the tip of an iceberg.
I'd better finish by saying that the above are my personal views, not those of PR in general! Cort would tend to give much more credence to all published research and be far less cynical about it than me...I guess he'd say much the same as you, IVI - but then, he doesn't live in the UK, lucky fellow...
Bit of a straw man. The issue for patients is that psychiatry is way over reaching and claiming primary causal explanations and therapies when it doesn't have either, and does not restrict itself to what it genuinely can offer, support in dealing with the secondary psycho-social consequences of the disease.
Not convinced this falls neatly under "normal psychiatric practice". Wessely et al pride themselves on bravely exploring new frontiers in psychiatry/medicine, in the face of 'irrational' hostility from patients, etc.
Well here is an "irrational" patient Sean. Not into changing the face of psychiatry (that is their problem - over a cliff hopefully) but the science/research/findings currently for ME - our way ahead now -pathologies mapped, suspect virals involved. The "make believes" have no part. Interesting the term CFS is used - are the Weasel brigade hedging their bets.
I'm agreeing that there are not typically significant differences in the rate of infection by gender. However, as morbidity is a significant component of susceptibility, and we have shown wildly different health outcomes for given infections by gender, it is a false statement to say there are no differences in susceptibility by gender.
I can only echo Mark's thoughts here. What data supports your claim that there is no sign of disproportionately more healthy XMRV+ males? Citation please...
Writing this on the hop as I'm busy - but so needs to be said!
Critical, rational analysis trumps irrational appeals to authority, at least it should when people are making critical analysis and appraisals of any given issue, private or public.
It's so sad that the peer-review system has become an irrational appeal to authority and unsafe and untrustworthy. But due to vested interests, it has. This is not 'mad patients' beliefs, it's known in academia and discussed.
There are various ways to develop critical thinking skills, even for 'lay-people'. People do not have to - indeed should not - assume on trust that any published paper has any merit at all (!), just because it has been published. Academics don't! I know this- cos I am one! Even medical doctors are supposed to have skills of critical analysis, even of peer reviewed 'evidence'. They write books for doctors to help them with critical appraisal of peer reviewed articles!
While people sometimes have to take certain things on trust (what these are vary depending on different situations) - psychogenic explanations and the 'treatments' they promote should not be one of those things, for people in this community. For those able - critical, rational analysis is your strongest weapon to protect yourselves.
So, going by this, a bunch of smug bastards who've achieved jack and shit in nearly 30 years, should all have severe chronic fatigue syndrome and be suffering in silence and leave us all the f*ck in peace?
WEASEL FATIGUE! YOU KNOW IT MAKES SENSE!
Well said KFG (post 35) zzzzzz...... to the fairy tales of Weasel and Co. The whole problem stems from the construct "somatisation" by a group (medics unfortunately) who leap easily to fill a "void" when biomedics cannot immediately find answers. It's a their word against mine sort of situation and with their medical training (in this case none for ME) their theoretics speculations and "word" are accepted by all after all everyone trusts a Doc - well not anymore. Their "all in the mind" has come close to discrediting the whole profession. They might like to try out being stretchered into A&E to be assessed by 3 recently qualified Docs who jointly offered "we've got a theory".!
I view the Weasel and his band of morons to be RATS cornered and they KNOW IT. They KNOW we ALL are coming at them and doing everything to nail them and make public what they have done to the entire UK population.
Just keep pushing the real info out to the public. I like to use the locked down UK Archive document (2071- year to be opened) to show people that the MRC is hiding something so terrible that it must be locked down until two generations are dead, basically. For what reason do you lock down a document for over 70 years? The military and CIA (other Intell orgs) don't keep documents locked down that long even when spies, etc are involved. So, what gives here?
The rats are cornered and you are seeing them trying to climb the walls in every type of contortion. KEEP UP THE PRESSURE!
I agree with you Angela, though it seems that thoughtful and intelligent analysis is ignored as a direct consequence of arrogance and political agendas?
Perhaps we turn the tables on them and give them back a little of their own ''medicine'' - and join the campaign at this link below.
An interesting short little video.
One of the reviewers said as much
The problem is that their measure of CF and CFS-like health states are extremely nonspecific.
Suggestions that inactivity leads to CFS is not valid unless the study is longitudinal and the patients are actually diagnosed with CFS by a physician.
Dolphin mentioned this study in the letter he posted. But I'll mention it anyway Wessley was actually involved in a better quality study that concluded:
My conclusion: such 'risk factors' are nonspecifc.
Damn, I guess 25 miles a day on a mountain bike at 7000-8500 feet wasn't enough.
Well, I was probably in the top 1% in terms of exercise ability, and after I got sick I was in the bottom 1% (Bicycle test with EKG and VO2 gas analysis).
Maybe TOO MUCH exercise is a risk factor as well? I met so many people who were previously highly active. Now I am told not to exercise other than walking (this comes from several specialists).
I am young, and it's quite funny I met so many really bright, good looking, and highly motivated people in my age range that are ill. I know people report stress causing their onset, but I had no stressors in my life at the time. Life was great until December 7, 2008.
What disease are they looking at? I think they are confusing depression with CFS and they must have grabbed the wrong cohort.
They're looking at primary depression. End of story.
Yeah, that sounds like a profile of Oympic medalist Michelle Akers, alright. Good thing her teammates helped her out when she got sick by bringing her groceries, etc. Before she got sick that would have been "social support," afterwards I guess it was just enabling.
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