Welcome to Phoenix Rising!
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 have been studying social media a little bit lately and have registered a twitter hashtag, IACFSME here:
http://www.foxepractice.com/?cat=105&s=IACFSME
It allows anyone, including those not too familiar to MECFS to finds all posts from one topic. So people go to the foxpractice site to find out about conferences, and boom! you find the tweets. It worked pretty well with CROI last year. You can still pull out all the tweets from that one conference.
It would be great if you used the hashtags in your future tweets and pass on the word to the norwegian journalist in attendance.
Jason reports Empirical definition identifies about 75% of CFS patients correctly and the CCC about 87%. CCC is better at diagnosing CFS but ED does have CFS patients in there. CDC studies aren't completely off. They have documented C3 abnormalities after exercise for instance and polymorphisms that are showing up in the Light studies.
Every NIH study uses Fukuda which every other CFS study (except CDC) - you would have to throw out every CFS study including those finding low blood volume, brain abnormalities, metabolic problems, EBV etc.....
It is long past time to cut our losses and get serious about the research. Start collecting data form nothing but well defined cohorts NOW. Old data isn't being held onto because it's useful to patients. It is being used because people at the CDC can't admit they've wasted all this time and money and that they have very little to show for it. This is ego trumping doing what is in the patients best interest and getting in the way of good science.
It's not the ME/CFS patients that are correctly identified that is the primary issue. It's all the non ME/CFS patients that are erroneously included. Jason documented a ten fold increase in percentage of the population that was diagnosed with CFS with the introduction of increasingly inclusive criteria. Jason also estimated that using some definitions, between 80-90% of the cohorts were not ME/CFS patients.
Every NIH study uses Fukuda which every other CFS study (except CDC) - you would have to throw out every CFS study including those finding low blood volume, brain abnormalities, metabolic problems, EBV etc.....
The exercise study the CDC was involved in didn't involve the empiric criteria.They have documented C3 abnormalities after exercise for instance and polymorphisms that are showing up in the Light studies.
For anyone who knows the jargon: the sensitivity of the empiric criteria may not be too bad, but the specificity is terrible.It's not the ME/CFS patients that are correctly identified that is the primary issue. It's all the non ME/CFS patients that are erroneously included. Jason documented a ten fold increase in percentage of the population that was diagnosed with CFS with the introduction of increasingly inclusive criteria. Jason also estimated that using some definitions, between 80-90% of the cohorts were not ME/CFS patients.
That 12% difference on it's own is a lot of noise and on it's own changes the signal to noise ratio (leaving out twice as many real ME/CFS patients 13% versus 25%). The actual amount of change is dependent upon the number of non-ME/CFS patients dragged in to the mix and when you are trying to pick up a signal from 10% of the participants in a study (while ignoring the noise from the 90% that shouldn't have been included in the first place) the statistical power of your design is almost as close to zero as you can get.
This population-based case control study enrolled 227 adults identified from the population of Wichita with: (1) CFS (n = 58); (2) non-fatigued controls matched to CFS on sex, race, age and body mass index (n = 55); (3) persons with medically unexplained fatigue not CFS, which we term ISF (n = 59); (4) CFS accompanied by melancholic depression (n = 27); and (5) ISF plus melancholic depression (n = 28).
Apart from Cort, other Twitter accounts one could check for info from the conference are:Cort has been Tweeting some comments for anyone interested. He can be followed at: https://twitter.com/#!/CortJohnson
Just saw this - great idea and nice site! This is all a learning experience for me.
I have been planning to do a little article about social media and importance of talking to people other than our own community. Twitter can provide that. More later.
Could he be presenting it as a poster?? (haven't followed it)I heard online saying that Chenney is presenting his MAF 314 result on this conference. How come his work is not listed in the agenda?