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Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

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Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#151

Earlier quoted context omitted.

I find it hard to look at American medicine and conclude that reasoned, careful rationing of costs is actually a factor.

You don't maximize profit by spending more than 15 minutes on each patient. That is how American medicine is reasoned. Time is money and medical mysteries are a waste of time.

You can certainly bill for running a lot of tests.

Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#152

[flagged]

> "Do you know what they call 'alternative medicine' that's been proved to work? Medicine." - Tim Minchin, Storm, 2008 I've been a big fan of Tim Minchin's, and thanks to living in one of the cities where he built much of his early fame, I've seen and enjoyed much of his work. But I feel like a form of Godwin's Law should apply to this quote. It's been done to death, it contributes nothing of value to the discussions…

This is not true. The medical field does a lot of research which is totally unrelated to drug development. Pick up a random collection of medical journals and look for yourself.

Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#153
post #89

Earlier quoted context omitted.

Nutrition. Exercise. Stress management. I think these are mainstream health practices. There are practitioners with other qualifications. Although I've met physios with some peculiar ideas that subsequently turned out to be have a very high proportion of adverse effects (e.g. spinal adjustments). My message is consistent, I hope: try what you will, but never pretend to expertise, and steer clear of recommending or su…

Nutrition. Exercise. Stress management. I think these are mainstream health practices. If you have a very serious medical condition, like cancer, and you talk to a doctor about things like taking vitamins, most of them will pooh-pooh it as if any impact it has is merely a placebo effect. Using nutrition, exercise and stress management as part of your defense in the face of something that doctors don't really know how…

Are there any specific vitamins which have been shown effective in treating cancer or other serious conditions? In general research into vitamin supplements hasn't shown any benefits, at least not for people with working digestive systems who eat proper balanced diets.

Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#154
post #55

Earlier quoted context omitted.

You said everything of that sort. If that was not your intent, then perhaps in future you might say what you mean, rather than defending the vendors of false hope and perpetuating the extremely harmful myth that one can treat oneself. As in this: > patients themselves are often better informed than general MDs No, that is a gross overgeneralisation and not true of any condition. A few patients may have slightly bette…

The problem for me is that currently the choice is between accept definitions of "authority" as it is decided for you, or "you've crossed into arrogance and idiocy." And the consequences ultimately are most severe for the patient, who has more skin in the game, literally, than the provider. I'm not talking about quack authority figures, though, either. Let's say, for example, that you, as a patient, have been reading…

Deregulating the whole thing was actually tried, in that we used to have no regulations. It was a disaster. Many people suffered and died unnecessarily due to treatment by quacks with useless "medicines". Read up on the history of the AMA and FDA.

Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#155

Earlier quoted context omitted.

> "Do you know what they call 'alternative medicine' that's been proved to work? Medicine." - Tim Minchin, Storm, 2008 I've been a big fan of Tim Minchin's, and thanks to living in one of the cities where he built much of his early fame, I've seen and enjoyed much of his work. But I feel like a form of Godwin's Law should apply to this quote. It's been done to death, it contributes nothing of value to the discussions…

On the contrary, I shared this quote having full knowledge of the cost and complexity and political barriers, having both studied the industry academically and being personally close to medical practitioners engaged in the research and implementation of new treatments. I think all suggestion of "alternative remedies" is dangerous, since it opens the door to those preying on desperation to sell false hope. I have an a…

IMO, it's an unhelpful quote because it's only useful for alternative 'treatments' that have been shown not to work (beyond placebo). It largely ignores the fairly large gray area of treatments that have shown promise but haven't been extensively studied enough to become part of mainstream medical practice. If no other treatments are available, investigating these options may be a perfectly rational thing to do (with the appropriate input from a genuine medical professional, not a random/unqualified 'alternative' practitioner).

Personally, I use caffeine, in addition to an SSRI, as an OCD treatment, based on a single, small (n=12 for the caffeine group)[0] clinical trial. Clearly the evidence isn't there to declare it a viable treatment -- it could easily be placebo[1] and/or prove to be detrimental for other patients -- but my doctor and I concluded that the risk of trialling it was close enough to zero in my specific circumstances to give it a shot. Thus far, it has provided a noticeable subjective improvement day-to-day.

(Note to any other OCD patients - I'm NOT suggesting you should try this, in part due to the anxiogenic properties of caffeine)

Of course that doesn't mean we should just throw open the doors to the various snake-oil pushers (especially where well-proven interventions exist), but IMO going too far in the other direction would also be a mistake.

[0] https://www.ncbi.nlm.nih.gov/pubmed/19573497

[1] Something I personally doubt, as other alternative treatments (including those I have suggested) have had either no effect or worsened the condition, but of course there is no way for me to rigorously test this.

Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#156
post #39

Earlier quoted context omitted.

Your assertion that "policy makers" are systematically withholding "solid information about your body" is paranoid nonsense. I said nothing of the sort. Both of the replies to me seem to be reading in enormous amounts of bs that isn't in my remark at all. Patients being informed about their condition is not all about people promoting snake oil. For some conditions, the patients themselves are often better informed th…

You said everything of that sort. If that was not your intent, then perhaps in future you might say what you mean, rather than defending the vendors of false hope and perpetuating the extremely harmful myth that one can treat oneself. As in this: > patients themselves are often better informed than general MDs No, that is a gross overgeneralisation and not true of any condition. A few patients may have slightly bette…

> A few patients may have slightly better information in one dimension of their condition than a GP. Presuming otherwise is foolhardy arrogance that misses the profound interconnectedness and subtle complexity of body systems.

This is precisely why a good doctor-patient is so valuable. Some (maybe not often, but at least some) patients _will_ know about the specifics of their condition better than a GP (e.g. if they have a scientific background and prepared to do sufficient reading), but the GP will be able to put that into a broader context of which someone focused on the specifics (and non-objective) will likely be unaware.

FWIW, my GP has said on at least one occasion "I'm considering drug X because of blood results Y etc. Go and do the reading on it and let me know next time if you want to try it; you'll have a deeper and more recent understanding of the potential benefits/side-effects than me" (IIRC it was the addition of levothyroxine to counter fluctuating fT4 levels, whilst accounting for any drug-drug interactions with current medications).

Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#157

Earlier quoted context omitted.

Unfortunately, CFS is not the only illness whose existence the medical profession generally refuses to admit. There are a host of other syndromes or symptom constellations that doctors can't find markers of and thus call psychosomatic. Generally, people suffering from these conditions congregate on message boards where they develop a culture and community. Sometimes this is truly productive research sharing and emoti…

At some point you start edging out of the realm of medicine and into the realm of expectations. So you're feeling bad, and you go to the doctor. The doctor listens to your symptoms, and does some tests -- blood tests, MRIs, listening to your chest, whatever -- for the most common causes. They come back negative. So he talks to some colleagues, reads his old reference books, Googles around a little, and comes up with…

>and slap a name on it, like CFS. But does that help?

If after 10+ years of being told there's nothing wrong with you while struggling with every aspect of life, and as it opens up the possibility of getting financial assistance from the state - yes. It helps immensely.

Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#159
post #47
post #9

If someone comes to you with a whole lot of pain and loss of function, ignoring it and thinking it's just in their head/they just need to toughen up and get over it because nothing showed up in thier blood reports is something that is almost ubiquitous in the medical field today. I have a connective tissue disorder that was ignored for years because nothing showed up in my blood report and I looked healthy. There is…

> Rarely it is psychological "Medically unexplained physical symptoms (MUPS) are physical symptoms for which no relevant organic pathology can be found. MUPS are very common, comprising up to half of all consultations in primary care and up to one third of those in hospital outpatient clinics.1 Some studies indicate higher prevalence; a landmark study of medical outpatients in North America with new complaints of com…

When you have chest pain you better get to a doctor, it might be a heart attack. Most chest pain is not a heart attack, but only a doctor can tell. Thus I expect most people to run to the doctor over "nothing": it probably is nothing but you need to verify that.

Re: Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

#160
Some commentary on this study by experts:

http://www.sciencemediacentre.org/expert-reaction-to-cytokin...

In summary:

- it's quite overhyped.

- we already knew that TGF-B was elevated in patients.

- as TGF-B wasn't increased after exercise, that puts into question how relevant it is as a biomarker, as symptoms tend to increase after exercise.

- it doesn't give any indication as to whether the illness is organic or psychological, as both depression and lack of sleep cause inflammation.

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