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There was another interview with him (maybe it was a CDC call?). He discussed how long it has taken to run the patients. I believe they are running one patient every two weeks. It is going to be a long time before we have final results, although he did state that if something major comes up...

It seems like the NIH is actually taking ME/CFS seriously. They are starting small, but trying to dig deep. Nath makes the point that "fatigue" in the vernacular may not describe what ME/CFS patients experience and always couples fatigue with malaise, which we all know is distinct. He also...

I've been listening to an audiobook called "The Obesity Code" by Jason Fung. He makes the case that weight increase is all about hormones, especially insulin. He talks about how calorie restriction can backfire, like with the Biggest Loser effect. I don't think it is a straight calories...

Just brain-storming...but is there someone here who can formally represent the patient community on other days? Say, as a representative for S4ME? I'm with @ScottTriGuy that patients should be included. I believe Cort attended all of the OMF conference (but could be wrong). Some of the what...

Whoa...Naomi...powerful stuff.

In the US, data is held in trust for the public. There are legitimate reasons why some data can be withheld, like for security purposes. In my state, refusal or delay in producing information can lead to fines that mount daily. Does QMUL have a library? I mean, do they spend funds to employ...

If public funds were used to produce the PACE data, to me...the data is for the benefit of the public and should be produced if the law states that the petitioners have a right to access it. The court reasoning is unsound as a matter of law and the public interest. I really appreciate David...

Yup, especially if you can get a web forum dedicated to a desperate patient group to publish on it without any actual published research!

This is why we still need the researchers to keep working. This is a drug that was developed and is now seeking a home. They did not study ME/CFS, determine a coherent model of disease, and then select a candidate therapeutic. But then again, maybe it will have some merit. Suramin is a...

It would be nice to see a group of psychologists that take an adamant stand controverting Wessely's theories and speaking up for a more appropriate role of psychology in this disease...one that starts by understanding our experience...including the abuse we've suffered because of the...

I can't eat carbs anymore...but boy do I miss my popcorn frenzies!

:( Thanks @hixxy...you are so good about posting new articles.

Just wondering if anyone has seen these papers and has access to them. Stork delivered this to my inbox today and they look interesting. I keep waiting for a thread to pop up! ETA: I've deleted the links in this original post as moderation received notice that they are broken. Abstracts of...

@Dial It In - I was sent for a $7,000 sleep study. Afterwards, the sleep tech specialist who has been doing this for 20+ years and was up all night monitoring mentioned to me that I had abnormalities he'd never seen. He said that he needed to look it up in the "Sleep Atlas" and found the...

@Milo - I'm glad you mentioned his referencing Tofacitinib. He mentioned it at the last CFSAC meeting and about trialling it, but I could not understand the name of the drug through his accent. I posted a question for the video interview with Dr. Montoya on S4ME and am eager to see if he...

If I'm not mistaken, the Collaborative Research Centers were funded by many departments in the NIH contributing a bit of money each. This indicates to me that Collins applied pressure to departments to find money in their budgets. It's not the way it should be, we should have dedicated funds...

He also mentioned that the Hutchinson Foundation has some new findings. Sounds like there should be some sort of publication soon.

Interesting and worthy debate. @petrichor - Have you experienced ME-adapted CBT? What was your experience? Given that you have had years of GET, are you recovered? I'm not trying to chide you, but the researchers claim "recovery" with these approaches, so I'm genuinely interested. In the...

Your posts of late are intriguing me. Whether you intend to or not, you are challenging people. We all respond differently to hardship. You are clearly a very resilient person. I have been ill nearly 9 years, but was only diagnosed at 7 1/2 after a relapse to a much lower state of function...

@MErmaid - I've been loosely following this thread, but wanted to mention Amrit Shahzad. She is the newest member of CFSAC and at the last meeting mentioned that her background is in the pharmaceutical industry and would like to build some bridges with industry for ME. Here is her linkedin...