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It’s the statement about a promise that concerns me. When the RFA stating the amount of funding was announced, Lipkin would not have even submitted a proposal. I’m concerned about promises being made behind the scenes.

It’s the appropriations bill. Advocates from Solve ME/CFS Initiative and ME Action work with supporters in Congress on the language in this bill every year. It’s important in that the agencies are supposed to take the language seriously, but it’s not as specific as designating that funds be...

Think about a child with MS in your child’s classroom. You wouldn’t worry about your child having MS also. You would just hope for the best for the sick child and keeping moving along.

I didn’t get a chance to watch, but I was very curious about the comments about a promised amount of funding. That seemed odd to me. Does anyone know what promise he’s referring to?

I agree that prevalence figures don’t change the work that needs to be done, but they may affect the willingness of the responsible health agencies to put appropriate resources behind that work. In advocacy work, we use these numbers all the time to convince those in charge of funding that we...

My question always is how well do we know any of these numbers to be factual. You folks in GB may have a better guess, but no one tracks this disease in the US. We’re mostly guessing based on a few community-based studies done years ago.

As someone who had a child who became very sick with this disease in high school, I have to say that I never met a parent of one of her friends who was seriously fearful that it could happen to their child as well. Do we have any idea where Dr Davis obtained that prevalence rate?

Interestingly, there was a point here in the US right after the Incline Village outbreak when there was a concern in the general population that this disease could affect anyone. Advocates were on every talk show in the US. People were terrified that this disease would be another AIDS. When they...

Palliative care is essential. Treatment for sleep and pain is pretty straightforward and can be prescribed by doctors with a basic knowledge of the disease. What often worries me is that when clinicians have patients flying hundreds of miles and paying thousands of doctors to see them, the...

I can only speak from my own experience, but I agree with this. The majority of those that I have known personally, as well as those from whom I am separated by one degree, are those who have traveled from doctor to doctor, searching for a cure that doesn’t exist. Despair sets in. I remember...

While I support those who are currently on Ampligen being allowed to continue, I do not think that ME Action should support the expansion of its use until the company that makes it answers the questions that were raised when FDA decided not to move it forward for approval. I would like to see an...

This is the time when Values & Policies are being reviewed by ME Action. Perhaps in the review next year that was discussed when @Michiel Tack received his response, a particular area of emphasis should be ME-pedia. I would certainly support that. ME Action is covering a lot of ground in this...

One of the reasons that I like this forum is that I am, by nature and training, a skeptic. One of my greatest frustrations is that, in the current situation, very few advocates ask the difficult questions of researchers and clinicians about research and treatments. I also feel that there should...

Since so much of the discussion has been about treatment, I went to check the treatment page. It’s almost completely a giant disclaimer. https://me-pedia.org/wiki/Category:Potential_treatments

But Wikipedia itself is loaded with misleading information. It is usually corrected by the community of users. It was initially even more full of errors but, as it became more popular, those who run it were able to more closely moderate it. The same could be true for ME-pedia. We have a...

I would strongly disagree, but I understand that you don’t want to divert the thread in that direction.

I would strongly disagree, but I understand that you don’t want to divert the thread in that direction.

I’m a bit baffled by the criticism of MEPedia. Is the general feeling that there should be no Wiki at all about this disease? All Wikis have the same strengths and weaknesses - because anyone can contribute to a Wiki of any kind, the information is usually considered a beginning place, not a...

Moderator note: This post has been copied and following posts copied or moved from this thread: A proposal for ME Action: a commitment to evidence-based medicine _____________________________ I’m a bit baffled by the criticism of MEPedia. Is the general feeling that there should be no Wiki at...

Does anyone happen to know the status of the research proposals that Dr. Davis submitted to NIH this year? I believe that there were 4 of them. I had heard that 1 was turned down, but I haven’t heard about the others.