Search results

Regarding point 1, I understand that it is the US congress that has to ask NIH to set aside funding. Lipkin told us to lobby congress years ago already. He said that is how other patient groups achieved set aside funding.

Distress and anxiety are warning signals. We need to act on them. Finding solutions for the issues that provoked a distress or anxiety response is the most powerful intervention. A treatment that restores functioning would fix a lot of distress and anxiety and frustration. There doesn't seem...

The EU could be providing meaningful amounts of funding and for useful projects. If they can understand the urgency and the unusual situation and are given competent advice on what to do. The first step has already been taken.

If like me you were wondering where the UK prevalence estimate of 0.2% comes from. Nacul et al arrived at 0.2% prevalence by searching electronic records of 142000 people for indicators of possible ME/CFS, then applying CCC or Fukuda criteria...

I like this.

I think patients with "medically unexplained symptoms" have been left to the psychiatrists for too long, and that psychiatry is content to pretend that it has something to offer them even when that is false. It's unclear but I think there is a real possibility that ME/CFS has been an umbrella...

There seems to be the assumption that there is only one illness to discover (that is, everyone either has ME or a known illness). We don't know if that is true. Overly restrictive entry criteria could limit the potential of the study to discover new things that we didn't predict, such as...

I'm sad that I won't be able to participate if recruitment is limited to the UK. The argument that recruiting from other countries could introduce a lot of bias is compelling. Shouldn't the very large sample size make this less of an issue though? Each country probably sees ME/CFS in its own...

Nice letter. If psychologists learn about psychology during training, but the learning material is based on flawed science that doesn't reflect reality, is the end result that psychologists consistently misunderstand other humans while thinking they have special insight into the psyche?

It would be good to know this sooner rather than later as I imagine that collaborators in other countries also need time to prepare. The European ME Alliance could be a good collaborator.

My mental model of the physiology is: When blood glucose levels increase after a meal, the liver stores glucose in the form of glycogen for later use. Once these reserves are gone, the body increasingly uses fat and amino acids as fuel. I think in my case there could be a problem of...

Re. chronic Lyme, mold, viral infections, EDS, POTS, dysautonomia, MCAS, CCI/AAI, Chiari, etc. I'm going to agree with Jennifer that these could indeed be related to each other. I doubt that she wants to create a diagnosis that will include everyone (as MUS does). Rather she is talking about...

Maybe he'll get chemo brain & fatigue afterwards and be sent to do CBT/GET and be told to work on his false illness beliefs.

That doesn't fit with the pattern of the response. Salt water drinks don't have such a noticable effect and don't pull me out of a symptomatic state. I'm pretty sure there's more salt in many of these drinks that I've consumed than the entire pizza.

It could be a signalling thing. Something like a metabolic switch from "starvation" to "abundant energy". Conventional wisdom can also be wrong. I'm not strongly convinced that it is wrong but it's a possibility that has to be considered. I understand that some carbs are digested and absorbed...

I think I noticed within two minutes that symptoms were beginning to improve.

Recently, I walked for longer than usual. While I was still out of the house, I gradually became more symptomatic: weaker, fatigued, dizzy, etc. After eating a slice of pizza, these symptoms improved significantly despite still being on my feet and walking. I think that is an important...

Are they saying my herpes simplex virus does more than occasionally give me cold sores in the face?

ME/CFS seems to be an opportunity to learn something truly new about health. We have no idea what is wrong and why, and that means it's unlike any of the diseases we understand. Society also needs to revise how it responds to such problems because what is has been doing is clearly not working...

That is exactly what happened when as child, I first reported to my parents that I felt too exhausted and unwell to go to school. It wasn't allowed to be real, it had to be psychological problem, something like a lack of willpower. The solution of course was to overcome this personal flaw with...