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Planck's principle - "A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it" Professors will at some point start teaching med students better and...

I don't think they have the RCTs to prove that sleeping, drinking water, activity, food and reduction of stress* is going to resolve the brain damage that Covid is causing, infact I know they don't. This is an entire a list of unevidenced patient blame.

As we have seen with ME/CFS, Lyme, Fibromylgia the ICD code doesn't make any practical difference to recognition from doctors. Its a necessary step, if they can't record a diagnosis correctly then its a problem but they don't use the codes they have anyway for these types of symptom.

Its based on the nanoneedle. MEResearch funded some work that replicated the nanoneedle finding and then there was a further piece of work by a PHD who looked at the electricial properties of cells without the the need for the nanoneedle component and found a similar effect but much cheaper to...

Last year they were talking about the potential for a Zebrafish model and now they have genetically modified some fish and run a number of tests with it. They were also talking about their mouse knockout model and that too is now delivering some results. One of the 4 compounds (one FDA approved...

The spine light up is quite interesting as well as I know a bunch of us suffer from crunchy necks and lower back pain.

More to the point if you don't have enough energy to live your life then what is the value in further restricting life to do exercise? Exercise is something healthy people can do because they have the spare energy capacity to do it, they may lack time but they don't like functional energy its...

Jonathan will appreciate Robert Phair's question on whether ME/CFS is an inflammatory process and what actually differs between acute and chronic inflammation and how can we be precise with our language? They seemed to express that its not a precise word but they don't yet know how to express...

Even if it was 3.7 million (which I doubt I looked before I can't find evidence of anything past the known 3 projects of a bit over 2 million) that is still less than £2 a sufferer per year. Its pretty dreadful funding rate, not something to be proudly proclaiming compared to what is spent on...

From NHS staff report where a third said they had Long Covid its hit healthcare workers pretty hard. On the other hand a third of those claim to have a diagnosis of Long Covid, the same can not be said for patients where the U09.9 record seems to be below 50k patients in total. I think...

If the goal was to actually do this well then sure, as we can point out there are a variety of ways to fix this to avoid the biased language and to address the diseases unique challenges in activities. Having the answers include the impact on other activities for example would drastically...

The thing is we know what it means and they know what it means but they also know they can't say it because it gives the game away. The entire point of all this slimy language is to get around the NICE guidelines and still be doing the same thing to patients justified with different language.

The response to my email on the issues I found were dismissive. They are going to keep pushing this garbage through and its going to be used to hurt people again. The MEA once again blessing harm for patients while refusing to acknowledge the sheer scale of the problem nor the levels of...

Seems to be the usual way in which this goes. Psychotherapist goes along with the patients view in the beginning and uses it to build trust to then use that trust to try and get them to exercise and do more. Its all just a ruse to try and make it appear like they believe in the ME/CFS disease...

Seems unlikely they are going to pull this study now just because its a terrible mechanism. Participate or not it doesn't make any difference any inclusion of patients or opening to suggestions is tokenism only at this point. Patient reviews are pure lip service it never changes the outcome of...

As far as I know no one has worked out how to get F. prausnitzii as a probiotic yet, because it dies in oxygen. I see no way to do a trial for something that doesn't exist yet.

"I told my doctors all this and they said “Good. Keep exercising as much as you can. Keep pushing yourself.” When I went to the doctor one day in a PEM crash too weak to hold my head up, I got ordered for physical therapy for “deconditioning” even though I was still working out." Whatever you...

This questionnaire is garbage. Its not just that it fails to determine combinations of activities or even the dynamic nature of the condition but it fails to even assess static disability well. It constantly has to define what the answers mean for the various questions. For example can you watch...

So almost all healthcare workers and less than half of everyone else. Seems like this is a problem that stems and flows from healthcare workers.

I thought that was a large part the point of the Lightning process, you lie to yourself that you aren't suffering symptoms and to other people and then your body "manifests" the recovery by fixing the errant brain linkage its claiming is the cause. Given that none of its results can ever be...