QUOTE="kermit frogsquire, post: 477120, member: 980"]Professor Edwards has declared an interest in researching ME.
Someone above mentioned - if people could make-believe illness surely millions of people would be doing it.
As I said, studies have shown that 75% of insomniacs have no objective evidence of insomnia.
And a recent study of food intolerance found a staggering 90% to have no problems at all.
www.michaelvanstraten.com/factsheets/food_allergy.pdf
Based on research a staggering 12million people in the UK claim to have symptoms following ingestion of certain foods. Yet, if you do double-blind food tolerance testing, nearly all those people can eat those foods without symptoms. A small number really do have food intolerances though, they are the ones that need a cure.
As the researchers put it -"The problem of self-misdiagnosis is not helped by celebrity food fads, such as diets followed by Carol Vorderman and Victoria Beckham". These are to some extent cultural issues, self-imposed behaviours.
Does this cultural effect also cause fatigue? Can people adopt ME-like symptoms? How many people who think they have ME actually have ME?
These are all valid questions and the very questions that the original BMJ artilce raised - has ME largely become a meme? Rather than get angry at that, anyone who is really ill should want this issue debated, and sorted out.
So, just as food intolerance is real, and there is a real illness called ME, we need our researchers to realise the problem so that research for the people that really are ill can make a difference. Just as we cannot do research on everyone who "says" they have food intolerances to find a cure, we can't do research on everyone who "says" they have ME. Otherwise you get ridiculous and dangerous results.
Therefore, since Jonathan Edwards is involved in ME research, he needs (emphasis very strong) to talk with doctors such as Wessely so that his research does not become a horrible mistake.[/QUOTE]
Hi Kermit Frogsquire,
Some days it just isn't easy being green. I understand the questions and why they have been raised. I guess you don't understand how easy it would be to pick out the psychosomatic, the frauds, the fakers etc. in the situation of CFS, FMS, ME. It's not really much different than picking out provider fraud in health claims or the lying non-standard life insurance applicant except that it is easier. Basically one might say that they wouldn't be able to pass a modern variation of the Turing test in a questionnaire. I don’t care where they got their beliefs and memes. And then I can apply a completely different test, and this one randomized that is excellent for trapping fakes. However, it could take perhaps 2-3 hours of taking a computerized questionnaire or live interview.
Or is that idea too far out for consideration, actually conducting a 2-3 hour interview? It sure doesn’t fit in to the 12 minute visit model. The other randomized test is done concurrently. The other thing one can do is line a group of 100 them up nude in order of how “healthy” they look based on a whole body look and how they walk around the room. But then what docs do a whole body visual these days? The majority of the genuinely sick will be totally obvious to anybody with decent vision. There wasn’t a doctor who saw me that couldn’t see that I was sick.
The only reason they couldn’t diagnose me was that the tried to use testing using the usual tests to do so and the tests are wrongly interpreted. They are designed to deny treatment, the AMA declaration of the 50s or has the current crop of docs forgotten that? Do they even teach that? They were not alive and can’t remember it from their life. Here is a current version of that.
http://www.kevinmd.com/blog/2013/02/fetish-vitamin-b12-shots.html
It’s not that he isn’t correct about b12 tablets, he is. For most people they work about as well as injections. There are some tablets that are superior to most injections. A 1 mg tablet swallowed gets about 10-20mcg absorbed into the body, and for a healthy person, that is all that is needed. More does nothing and is not detectable by the person. A 1mg IM injection or 7.5mg SC injection will have an instantaneous blood serum cobalamin of 100,000 to 200,000 pg/ml and that is enough to penetrate the cerebral spinal fluid by diffusion.
The level lasts a few minutes from a 1mg IM injection and the level from the SC injection stays that high for more than 8 hours. What people who are deficient of MeCbl and AdoCbl in the cerebral spinal fluid (CFS, FMS, MS, ALS, Parkinson’s, Supranuclear Palsy, Autism, Alzheimer’s, in addition to low cobalamin, elevated MMA and HCY) feel is not placebo effect at all. That is the AMA’s story going back to the 50s. Deficient people can reliably and repeatedly feel cerebral B12 onset in a double blinded situation.
Right now the only problem is that the software for generating and recording the questionnaire is just in the design phase. However, the questionnaire part is easy enough and small enough. The more time consuming part is the design and implementation of the analysis of the data. However, that can be done in Excel for the most part “and little grey cells”, it just takes more brains-on time.
Of course if a “treatment” of any kind works on one of these CSF/FMS/ME group it’s placebo of course, and they get well then it would be dismissed as just more evidence the whole thing was psychosomatic. Very nice, just like dunking a witch; if they survive the test they are guilty and executed. I started investigating my situation in 1978. What I found was very disturbing. I found that the entire understanding of this disease is warped by having false foundations supplied by researchers. It’s easy to ask the questions to determine if a doc can even possibly think about it correctly, that is with the facts about certain things in mind.
I’ll even interview you, without my knowing who you are, and you can fake it and lie about it as well as you are capable, and I will probably pick out the fakery, or possibly not. You might be a good liar and know enough to fool me. Maybe you have 21st century mystery disease under one of many other names and not even realize it and you give me real symptoms. Then you wouldn’t be lying and faking, just flying under a variant name. In my analysis I don’t use words like CFS, FMS, ME and so on. I describe what I find by in other terms. There are lots of physical things to be found, just not the ones you and many others are looking for as there isn’t the correct understanding there to pick the right tests or interpret them properly.
I can demonstrate what I have said. What number of people do you need to observe while in the process of recovering or reacting to cerebral onset of B12. Would ANY number be convincing to you? Somehow I doubt that there is anything that would convince you.
However, as those “It’s All In Your Head” under all the versions and others; “secret alcoholic”, “too many symptoms to be believable”, “liar”, “conversion disorder”, delusional and other such things are certainly consistent enough that they make a good wrong diagnosis stand-in for a correct diagnosis. We know what they mean. So as long as docs keep screwing up consistently we can use it. It just confirms the diagnosis and points out the docs dangerous to our health so we can go somewhere else and be treated by docs who at least don’t despise us or whatever causes their aberrations.. It’s docs who want to prescribe major anti-psychotics as a sleeping aid because of all the sleep disorders who are dangerous. The polypharmacy sure does mess people up. Also it was expensive. I like being healthy much better.
Holding on to 19th century memes, even dressed up in a new façade, does make the doctors look awfully ignorant or stupid to a lot of people. I had to interview nearly 100 doctors in order to find one who was willing to help me heal. So from your viewpoint, or at least the one you are supporting aggressively, my 11 year saga of healing and rehabilitating from CSF, FMS and congestive heart failure is what? It’s based on 35 years of journal reading, running trials, data mining the internet and debugging the problem. Yes, it is a different way of thinking. And I got results. I spent 30,000 hours solving my problem Maybe you could solve it too with 30,000 hours of effort and decades of A-B-A-B trials. It has been my full time as possible occupation for the last 12 years. There was nobody else willing to solve my problems. I couldn't have afforded me, or anybody else, at my usual consulting fees.
So Kermit, let's hop on down to Hoppers for lunch and talk about it. Have fun.
