Daffodil
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i know its typical to think that what works for you will work for others....but I really wish people would find a way to get to dr. demeirleir. things would stop being so hopeless...I know it.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I feel estranged even from these forums sometimes because people talk so much about recovery and I'm far removed from that concept. For me all there is, is daily survival pure and simple until the day I die. Every thing I do has the singular goal of supplying enough function to avoid losing what I have left. That's it.
i know its typical to think that what works for you will work for others....but I really wish people would find a way to get to dr. demeirleir. things would stop being so hopeless...I know it.
Hi all!!I need to let off steam so sorry for my rant!! I am so fed up of hearing all the online recovery stories on places like you-tube, where someone did some programme or had some life style alteration and they got better! They make it seem so simple and easy and I only end up feeling rotten and frustrated because it doesn't feel easy to me!! It also makes me feel guilty because I haven't got well!! I don't know if I am been unreasonable and I should just be happy for them and I know some people can improve and go into remission but I just end up wondering if they actually had ME if they got well so easy!! This video started my rant!!! Hope I don't offend with this but this women really made me angry!! Sorry again if anyone actually finds her an inspiration, she just upset me. Sorry again! End of rant!!
he believes the illness is caused by intracellular bacteria. his team is the only one who has done genetic sequencing on tissuewhat is Dr D.'s "playbook"? ie, from what I hear, he's super focused on the gut... anything else? OMI is really focused on gut & viruses..
This is helpful. Why bogus therapies seem to work.
http://www.health24.com/Medical/Dem...y-bogus-therapies-often-seem-to-work-20120721
thatDr Barry Beyerstein, noted scientific skeptic and professor of psychology, wrote in Skeptical Inquirer
3. The power of the placebo effect.
The belief that we are taking treatment which can cure an illness, causes powerful forces to effect an improvement through mind-body connections. This is called the “placebo effect”.
...until proven otherwise, there is no hard scientific evidence anyone recovers from ME (as we don't know what ME is)...
...All of this doesn't matter, any more in view. Private researchers who exist on tiny donations will change history for the better, in the face of government denial and total refusal to spend the correct amount of research dollars required to save lives...
The most worthwhile CFS project to donate to at the moment is at the Open Medicine Foundation.
http://www.openmedicinefoundation.org/the-end-mecfs-project/
Maybe the small number of recovered Youtube presenters whoperhaps monetize their videos would kindly make a donation to the disease they managed to beat, as now they can work and aren't impoverished like us. It would be a nice gesture if thousands of their viewers could follow suit and help advance the research.
From the Lipkin-Hornig findings we can surmise that short term and long term ME patients will have different pathophysiology, at a different stage of the same disease. Further, at under one year it might be hard to differentiate CFS using Fukuda from regular post viral fatigue.Her illness certainly sounds genuine, though it is quite likely that those people who recover after 1-5 years have different underlying pathology to those who don't.
he believes the illness is caused by intracellular bacteria. his team is the only one who has done genetic sequencing on tissue
I've never particularly liked the term skepticism as it's often taken to mean argumentation just for the sake of arguing. That is far from true. The original word comes from the ancient Greek philosophers and had a somewhat different connotation than today. It's suppose to be the opposite of dogmatism where knowledge is static verses believing knowledge can evolve or change. In its pure form when applied to science it means going into an experiment without a bias of how it will turn out. Emphasis on "pure form". It means considering all possibilities before coming to a conclusion.Dr Barry Beyerstein, noted scientific skeptic and professor of psychology, wrote in Skeptical nquirer
the doctrine that true knowledge or knowledge in a particular area is uncertain : the method of suspended judgment, systematic doubt, or criticism characteristic of skeptics
I don't think he meant that literally but figuratively though I have to admit the wording is a bit too dramatic. I would be quite surprised if any skeptic would say there's a magic power. I interpreted it as meaning exactly what you said.The belief that we are taking treatment which can cure an illness, causespowerful forces to effect an improvement through mind-body connections. This is called the “placebo effect”.
And just what magical powerful forces might these be? And what do these mind-body connections look like
I think this says it better than I can.I would have thought the placebo effect was actually the sum total of the other six reasons e.g. temporary mood improvement (hope) leads to temporarily feeling better; psychological need to report an improvement after spending money and time on a cure
The placebo effect is the measurable, observable, or felt improvement in health or behavior not attributable to a medication or invasive treatment that has been administered. The placebo effect is not mind over matter; it is not mind-body medicine. 'The placebo effect' has become a catchall term for a positive change in health not attributable to medication or treatment. As is explained below, the change can be due to many things, such as regression to the mean, spontaneous improvement, reduction of stress, misdiagnosis in the first place, subject expectancy, classical conditioning, etc
The belief that we are taking treatment which can cure an illness, causes powerful forces to effect an improvement through mind-body connections.
Question:"The 5% that may be recovered... since there isn't a lot of testing done yet, could it be that those 5% don't even really have SEID, or CFIDS, or Iceland Disease or whatever you want to call it?"
Dr. Bell:"Yeah, but I don't think so."
Question:"You do think that 5% might actually recover?"
Dr. Bell:"Oh, yes.
Question:"Oh, really?"
Dr. Bell:"Yeah. That's something that I've looked at very intensely over the years... I wanted to know what did they do that was different - that caused them to recover. Did they exercise more, or less; did they take more vitamins, less vitamins; did they eat better?
"Now Lyndonville is a very small area, and I was the only physician in the area - so I kind of had a lock on these patients - and I was nice to them - I tried to be nice. And after looking at this, about half of the patients ate terribly. You know, they'd go to McDonald's every once in a while - and the other half ate meticulously - very good foods - and I didn't see any difference. Half of them had lots of vitamins, half of them did not... So I couldn't tell.
"But what I was quite sure about was that they had the same illness.So, I had lots of ways of measuring the severity, measuring the complexity of the symptoms. For example, I was very intent on measuring the degree of lymph node tenderness. That's an unusual symptom - so that if you have rheumatoid arthritis, that's not one of the things that would happen.So I'm quite sure they all had ME/CFS and there was a subset that clearly did get better."
Question:"And you never had any inkling of what it was? [That caused them to recover]"
Dr. Bell:"Not an inkling - -"
[See at 46:52 in the video. He had mentioned the 5% recovery rate earlier in the lecture as well.]
I would ignore this sort of crap. It always comes down to people trying to sell something. If they aren't looking for money, they're looking for recognition that they are somehow superior and able to overcome biomedical illness with their amazing and enlightened mindsIt also makes me feel guilty because I haven't got well!
Yes, that really irks me. 99% of the time it's false. Especially when people use the word "herx" to legitimize it. A herx is a phenomenon that only occur in response to rapidly killing off certain types of bacteria.Worse, if you're not getting better it must be because "you may get worse before you get better".