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This article seems to be the one used as reference for radiopaedia and it indeed mentions a BDI of <8.5 or <12 mm in 95% of the population. It also references to a study where the mean BDI was measured as 4.7 mm. Jen's numbers don't make much sense to me either when compared to the referenced...

Just to clarify, my only point was that when discussing the remissions from CCI surgery, the improvement following traction described in both cases seems highly relevant. Both Jen and Jeff experienced a massive and instant remission of their symptoms following cervical traction performed in a...

This is a good point and for sure we cannot fully rule out all the various possibilities of how these recoveries were achieved. But if we take a closer look for example at the story of Jeff which is documented on his website, it mentions specifically how mounting a halo brace helped his severe...

Ivabradine reduces heart rate without having any significant effect on blood pressure, unfortunately the doctors I've discussed with are unaware of this medication.

Hm that's an interesting new way to look at it, I never thought about this possibility. I experience the same issue with more than ~6 hours of sleep making symptoms worse and symptoms typically improving late in the evening, so looking forward to hearing about your results.

I wonder if there is some curse on ME/CFS. Not only can't it be treated, but once we manage to get a researcher working in the field, they will run in trouble either by their own or through circumstances. First the Mikovits debacle, the Lipkin lawsuit, now this... If I was a believer in...

I have been working in university research projects for several years and my experience is the following. During official meetings with an agenda, creativity is often implicitly suppressed and there is little real exchange of ideas or commenting on each other's ideas. However, the few times a...

Ron Davis mentions supplements briefly in a panel session at this timeline, but he was rather (or completely) cryptic about the details...

The impact that the placebo effect can have depends on the type and degree of illness. Just for the sake of example, a paraplegic isn't suddenly going to walk just from the placebo effect of receiving a pill that claims to cure paraplegia. Likewise, if a placebo surgery was for example given to...

Couldn't be further from the truth. Actually receiving a CFS diagnosis and especially any wage benefits from CFS is almost impossible, at least in Finland and Sweden (and Denmark didn't even consider CFS a disease until the recent parliament decision). The situation became so absurd in Finland...

I agree in principle with most of what you said. The fact that ME/CFS can remit spontaneously is indeed always a possibility and there could be a number unknown factors involved, which affected the end result. But there are aspects of these stories, like the part below I quoted from the web site...

I've had quite a few supplements produce temporary results over the years, but they almost always stop working. I don't believe it's placebo because it doesn't happen with every supplement. I also don't believe those supplements provide my body something that it's "missing" or that they would...

I also find it really interesting that both Jen and also Jeff (unless I remember wrong) experienced an instant remission of POTS symptoms following surgery. A significant subset of ME/CFS patients experience POTS and the fact that POTS resolved immediately makes me think it might be the key...

Actually one of the first patients that Fluge/Mella studied had cancer and ME/CFS, which is why she received rituximab. This patient had an unexpected remission in her ME/CFS following rituximab treatment for her cancer, which started the whole hypothesis that rituximab would work for ME/CFS. So...

Not if ME is a consequence of OI/POTS/ANS dysfunction, which we cannot rule out. Only time will tell if the reported recoveries will last, which is why I believe Jen wisely used the term "remission" instead of recovery. But anyhow, we now have two high-profile ME/CFS patients that report they no...

Actually Jen went maximum public not with her recovery, but with her illness long before that. Now when she already is a public figure it's a bit hard to back down. What if someone spots her hiking or jogging somewhere? Seeing a bedbound ME/CFS patient engaging in full activity would raise even...

I agree that high titers don't imply a "persistent active infection", which is the term that someone used few posts above. And yeah, it wouldn't be good if they antibodies completely cleared up, thanks for correcting that. According to what Naviaux mentioned in a Q&A, high antibody titers could...

If I remember correctly, Jeff had exactly the same thing as Jen, massively elevated viral titers (against EBV?), but all this cleared up after the CCI surgery. Medicine has a very poor understanding of how the ANS works. I have spoken with lots of doctors and they just shake their head whenever...

I could be wrong but I'm not sure the PACErs will engage in this argument or with her story at all. Some lower profile Twitter trolls will for sure and maybe even some of the Norwegian LP gang. But the PACErs tend to have very carefully thought out media strategies; as psychologists they seem...

Why? Jen's diagnosis of ME/CFS was made on valid grounds and she had all the typical symptoms, so everything described in Unrest is still more or less correct. It has always been known that ME/CFS is a chronic condition from which around 5% or less manage to recover. Now it seem there is one...