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To be clear, CDC is not planning to use this report. Dr Unger at CDC has said publicly that it’s useless. The point when this review started years ago was to add some good treatment recommendations to CDC’s information about ME/CFS. The expectation was that good, peer reviewed studies would have...

This is entirely anecdotal, but I had an appointment with my ME/CFS doctor last week and he had spoken with Dr Nath. Dr Nath said that after the papers are written up and submitted for the research done so far, the plan is to reopen the study with an emphasis on treatment. My doctor was calling...

Unless I am mistaken, the major ask for the increased funding is for a serious epidemiological study - something that we have needed for a very long time. CDC is very different from NIH. The usual with NIH is to appropriate a bulk amount of money and allow NIH to use it in whatever way they feel...

In an interesting coincidence, my niece works as an office manager for this researcher. She has told him lots about my disease experience - maybe more than he wanted to know! - and she has told me that he is very excited about the possibility of helping those of us with ME/CFS as well as long...

Just checking - has it actually been shown to differentiate between people with ME/CFS and people with other diseases? If it is going to be used to provide a pure cohort, that is necessary. What I remember hearing is that the nanoneedle showed that pathology exists, but hasn’t been verified as...

I may have missed some things, but I thought that the nanoneedle was basically a device that takes measurements to improve diagnosis of ME/CFS. Maybe it is a gateway to better research, but is there more that I am missing?

Thinking about this, I believe that the risk of suicide may be higher among people who get their hopes up about treatment after treatment that turn out to be ineffective. Just the process of going through the treatments can leave patients despondent and in a far worse financial situation. I...

Another difficulty of not publishing is that no one is able to ask the hard questions that are necessary to make sure that research is solid. Rather than being a waste of time, publications can lead to eliminating flawed theories or strengthening good hypotheses because of input from the larger...

This letter has been going around for a long time. It’s evidence of what a dreadful person and a poor scientist Straus is, so it’s part of the historical record, but he’s been dead since 2007. He did this community a lot of harm and was a significant source of the stigma that we still...

I vastly prefer Dr. Younger’s term “cognitive disruption”. My brain doesn’t feel foggy; it feels totally wrecked. It felt like using a well oiled, precision piece of equipment and suddenly having it replaced by some old clunker of a brain. One of the worst feelings of my life was looking at my...

No argument from me - it was a terrible choice of a name.

And, just for the record, Straus wasn’t CDC Director. He was a researcher at NIH.

Older names are “grandfathered” in. In the US, going from CFS to ME is a name change. Just like they no longer allow diseases to be named after people - no “Ramsay’s Disease”. And I do think that most of the people seen back in the ‘80s did say that fatigue was a major symptom. Probably...

I understand that the British perspective is that you had a perfectly good name - ME - that was arbitrarily changed by a committee in the US to a terrible name - CFS. As someone in the US who became ill in 1983, I have to point out that we were not being diagnosed with ME. My doctors were very...

Thank you!

It’s not just Whitney. It goes back to the beginning of OMF. And I do not mean it as a criticism - everyone has to raise money. It was meant as a concern for the community’s reliance on one heroic figure when that isn’t usually how the best science is done. Whitney can call him whatever he...

Hi! Haven’t been here for a while - very bumpy year! I wish for the best of luck for this book. It may bring good attention to this disease. And I respect Dr Davis tremendously as a scientist, especially when he just talks openly about his work as he has in Ben’s videos from time to time. But...

And Claudia corrected herself of Twitter. He said that we need 500 to 1000 researchers; not 500,000. It’s hard to catch all of the information on the call.

He’s not really a politician; he’s a neurologist whose primary interest is research on the brain. A Harvard Professor of Neurology before being tapped for NIH. Collins didn’t assign us to him. We were a part of the package when he became head of National Institute of Neurological Disorders and...

No doubt about that!