ME/CFS? Don't spend money on tests.

I just recently read about a ME/CFS patient being robbed 2500 (!) British Pounds by one of our resident ME/CFS quacks. The patient went to Belgium for a short visit, and got one blood drawing for 2500 GBPs.

Oh my, oh my, oh my.

This is not how a proper differential diagnosis is done. A differential diagnosis rather follows a "rinse and repeat" pattern:

1. First, the doctor needs to get an overview of symptoms.
2. The she/he needs to consider the symptoms and think about what it might be, or might not be.
3. The doctor should then have list of a few diseases that could be it.
4. On that basis it may make sense to order one or the other test – it makes most definitely no sense to order tests for thousands of Dollars/Euros/Pounds
5. Taking into account the test-results and the symptoms, the doctor gets a preliminary diagnosis, based on which treatment can be chosen.
6. If there are signs that the diagnosis is not the correct one, some (or all) of the steps above need to be repeated.

A diagnosis based on a short consult and expensive tests is not worth the paper on which it is printed! Every symptom could be important.

I for an example did not put enough value into my skin symptoms. Turns out the aphthous ulcers I had (together with other skin symptoms) are a key sign for Behçet's – and there is no blood test (or otherwise) for Behçet's. The only thing a doctor can do is carefully make note of all the symptoms, and knowing to look up the diagnosis of Behçet's.

Blood tests alone are a waste of money, especially if a doctor orders lots of them.

If you have ME/CFS, don't spend large amounts of money on tests – you need the money, I'm certain.

If your doctor wants to extract $$$$$ from you for diagnosis, tests or treatments: Change your doctor. Even if he claims that the tests or the treatments are a bargain. Especially if he wants thousands of bucks from you for tests and claims it is a bargain. And especially if he does the tests in an lab that is closely associated with her/him.

My advise: If a doctor sees you as a walking ATM, then change this doctor, because she/he is bad for you and your health.

There are some tests that might be called for, e.g. tests for hypothyroidism, BUT THE WORTHWHILE TESTS ARE PAID FOR BY THE INSURANCE. There are some test that might be "interesting" (like the NK-cell function test), but they do nothing to help you get "more legit" as a patient, or to choose a better therapy.

And just because someone is "Anti-CBT" or "Anti-GET", that does not mean he knows what he does.

Fuck That.

David Healy - Time to abandon evidence based medicine?

• You can't trust trial data
• You can't trust reviews (not even Cochrane Reviews)
• Real significant problems (e.g. increased suicides on Prozac) can be "statistically not significant"
• Data is hidden
• Evidence vs. Evident: Large controlled trials are needed to weed out the drugs that don't work – drugs that "really" work show their effects in small trials. If you need 10,000 people to show an effect, something is fishy.
• If alcohol were a novel substance, a (hypothetical) trial could be made that would show that alcohol works as an anti-depressant drug
• In this (hypothetical) "alcohol as anti-depressant drug" example, one could even get alcohol as drug to be included in the NICE-guidelines
• One (hypothetical) 6 week (!) trial alone (!) could "prove" that the economy would save lots of money by putting people on alcohol for depression
• And this (hypothetical) one 6 week trial would be enough "prove" that doctors would insist that patients should take this drug for life(!), because the condition is life-long
• If a drug causes symptoms (e.g. more suicides), which the disease can also produce, then a control trial can not answer that question for you
• Clinical trials are not the answer:
  1. If both the illness & the drug cause a problem
  2. If the clinical population is heterogenous (if the underlying condition is unknown)
  3. If the researchers don't know what they are doing
  4. Clinical trials cannot provide patient level answers
  5. Clinical trials do not reveal cause and effect
• Doctors will defend prescription drugs – and hereby delay investigation into adverse effects by 15 or more years

And all that is not even including the carnage done by quacks…

Fuck that.

We have all these amazing medical, technological and scientific advances, which should put us in a position to fight diseases in a way that would make all the Pasteurs and all the Enders' and all the Salks and all the Sabins of past times green with envy. Where is the evolution in medicine? Why does it seem to me that we are stuck in a dead end?

The medical profession does well with clearly defined illness – say HIV/AIDS – that, if left untreated, lead to clearly measurable, visible adverse outcomes. But things like depression? MS? T2DM? In all likelihood, the treatment may lead to worse outcomes than if the illness is left untreated.

And this hits me at the moment. My doctor is willing to try out medication for my ME/CFS and therefore I'm currently looking into what agonist drugs are available to stimulate the alfa 2A receptor which is shown to be involved in at least subgroup of patients. Besides

• the almost total lack of scientific interest in ME/CFS by the medical commuity that leads to a situation where every person with ME/CFS is going from one "personal drug trial" to the next because guiding trial data is non-existent,
• besides not having any certainty whatsoever what actually the pathology is in my case (besides some personal indication that the alfa 2A receptor might be involved for me as well),
• besides not knowing if a stimulation with an Ad2A agonist is actually the right thing to do, if it is the Ad2A in my case,
• and besides not knowing what the actual (vs. claimed) spectrum of adverse reactions of these drugs is,

besides that I am totally at loss whether the supposed alfa 2a agonists actually do what the pharmaceutical industry claims they do.

Should I give Guanfacine a try? Or rather Tizanidine? Maybe Xylazine? What about Lofexidine?  Is Brimonidine only for occular hypertension?

I know, let's play guinea pig! And if one doesn't work, or makes me awful, then we try the next! Oh boy, what fun.

I feel like I might go to a pharmacists, and at gun point take any random medication and try that – and not be worse off…

But it sure is nice to see a psychologist like David Healy sharing his good insight into the problems of his profession and giving his best to address them properly.

Gary Taub on Big Sugar

Gary Taub on Big Sugar:

… Following the Montreal conference, the ISRF disseminated a memo quoting Errol Marliss, a University of Toronto diabetes specialist, recommending that the industry pursue "well-designed research programs" to establish sugar's role in the course of diabetes and other diseases. "Such research programs might produce an answer that sucrose is bad in certain individuals," he warned. But the studies "should be undertaken in a sufficiently comprehensive way as to produce results. A gesture rather than full support is unlikely to produce the sought-after answers."

A gesture, however, is what the industry would offer. Rather than approve a serious investigation of the purported links between sucrose and disease, American sugar companies quit supporting the ISRF's research projects. Instead, via the Sugar Association proper, they would spend roughly $655,000 between 1975 and 1980 on 17 studies designed, as internal documents put it, "to maintain research as a main prop of the industry's defense." Each proposal was vetted by a panel of industry-friendly scientists and a second committee staffed by representatives from sugar companies and "contributing research members" such as Coca-Cola, Hershey's, General Mills, and Nabisco. Most of the cash was awarded to researchers whose studies seemed explicitly designed to exonerate sugar. One even proposed to explore whether sugar could be shown to boost serotonin levels in rats' brains, and thus "prove of therapeutic value, as in the relief of depression," an internal document noted. …

Warning: Article is spread over three "pages".

Money and Fraud

Too little money for research, and you get fraud as a result. Though too much money seems to be a problem as well:

Texas's $3 billion [per 10 years] cancer research agency is in trouble again: Its peer review system appears to have come apart. The entire eight-member scientific review council of the Cancer Prevention Research Institute of Texas (CPRIT) is stepping down, with most citing concerns about the integrity of the agency's peer review process. Many members of CPRIT's 100-strong roster of peer reviewers have begun to follow.

Looks like the NCI isn't the only one that got a little bit sloppy with billions from the "war on cancer".