Search results

Less commonly now, almost rare, but I used to have them all the time and some I know with ME and sore throat have sinus issues almost constantly. There is an exception to that, quite recently, that now I can choke on sinus mucus when lying down. This is just a few months old.

Hi, anecdotally I have had discussions on this many times with other patients. I have a constant dry sore throat. So do many of us, but it can also come and go. With me its more wax and wane, but its there. Drinking makes things feel better. Gargling mouthwash helps sometimes, and ice cold...

Our bodies can make most saturated fats, but not all. What we can do is convert some fats that are similar to the essential ones, but I have not investigated the details. The claimed essential fats are named after the number of carbons in the chain, either 15 or 17. The more important one...

There are so many potential confounds here. Even presuming they are correct in their findings, and I do not, they probably have an association, and from my own experience its a long term ME crash that stopped me eating healthy for years, resulting in a worsening of my type 2 diabetes. Prior to...

Nick Norwitz recently cowrote a paper on lean mass hyper-responders, using their new lipid energy model. Cholesterol goes way up but there is no increase in signs of cardiovascular damage. So for this subset, lean and metabolically healthy on keto or very low carb, there is no increased risk...

Moved post In about 2015 I had multiple incidents of me misremembering, or just not remembering at all, plus the usual focus issues. I stopped writing blogs, stopped researching my book, and became less active on the forums. While its my personal experience, and not a scientific recommendation...

Perhaps the OI/hypertension discussion might benefit from my experience. I am not alone, but I have BOTH hypertension and NMH, neurally mediated hypotension. My hypertension is constant, my OI is usually suppressed except when very tired, such as my two and a half days without sleep earlier this...

Once I fully implemented pacing I felt much better at a higher level of disability than when I was working part time or studying at university. Symptoms relate not just to the severity of illness for me, but how it is managed. Symptoms are worse when things are mismanaged. Learning to adapt and...

In assessing disability using checklists for other diseases we often fall short. That is, in my opinion, a problem with how disability is assessed. So it becomes easy for the disability to be dismissed. This affects both medical bureaucracy and the medical practitioners as a whole, will follow...

This might fit the vesicle speculation. What happens to vesicles that are frozen like that? I don't know, but I think we need to know. It may be nothing, or it may be important.

I have been thinking about this a fair bit, but from another angle. I also have type 2 diabetes. If ME involves mitochondrial suppression, and elevated lactate release, then there are several problems. First, energy demand will drive glycolysis and not the mitochondria. Limitations of blood...

Current glycosylation testing is only for glucose, and fizzy drinks often contain a lot of fructose. Fructose is very much more glycating, and persists longer because only the liver can convert it. In doing so it damages the liver, using up ATP and resulting in uric acid. So be careful...

My suspicion is that we can restore our short term muscle energy store. This means we have enough muscle energy to function, but its gone very fast.

This needs a serious follow-up, especially since problems can be induced in healthy muscle tissue by incubating it with ME blood serum for two days. A signal is in our blood, and I have seen speculation that it might be due to our large numbers of vesicles containing a large number of...

I have had complete remission of all symptoms for some days, though usually about six hours. I have also had restoration of energy but with other symptoms remaining. Spontaneous remission of symptoms is not random in my opinion, just hard to pin down as to cause. My experience fits entirely with...

That yet another doctor who not only cannot help but still thinks they can. Doctors can support us, but they will not cure us until we have an actual cure.

At that time a lot of medicine, and softer science, was about showing they are right, and its up to others to show if they are wrong. It was about confirmation, not testing. This is pre-Popper and the notion of falsifiability, or even trying to break hypotheses. There is a specific name for this...

We do not know what causes ME, we do not have specific mechanisms. What we have is multiple triggers and lots of hypotheses. We know what triggers LC for probably the majority of cases, though a small percentage might have had multiple potential triggers at the same time. We do not have...

I have been considering that not all cells are affected the same for decades. This should be the default assumption in my opinion. However there are tissue types that show abnormal physiology, including immune cells and vascular endothelia. There are also differences in energy demand by various...

Placebo is still useful as a control condition in studies. Otherwise, aside from pain, it is often bs as you said.