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This is another good sign Dame Anne Johson, the new President of the Academy of Medical Sciences (UK) has made engagement with the public and patients one of her five priorities: It is essential to involve the public in decision-making about research and care so that we can collectively...

I agree with your point! We need to remember that patients are a diverse group with a range of views. Prioritise ME has a process for compiling a top 10 of priorities. It's not about getting an agreement on a single priority. Patients are heavily represented on the working groups and there is...

@Barry @Trish @Starlight @DokaGirl - thanks, glad you liked it. Absolutely, different patients have different priorities. And as I'm sure you saw in the blog, the goal of Prioritise ME is to draw up a list of priorities, which it is doing by making patients part of the process, as well as...

For faster progress in ME/CFS research, funders and researchers need to treat patients as partners, not subjects Publicly funded research aims to benefit patients and the best way to make sure it does is for researchers and funders to partner with patients. This will ensure research...

The data from a GWAS like DecodeME is perfect for testing this as well as many other hypotheses. Ultimately, it is lab and other experimental work that will prove things in or out, but any hypothesis that is rightht for a substantial number of people with mecfs is very likely to have a genetic...

this is a little complex to interpret. During the early space programme both NASA and Russia did extreme bed rest studies on earth on healthy volunteers as a proxy for deconditioning in space. They also studied astronauts when they returned from space. These were all very small studies as they...

as I said in my previous post, rare variants are not usually like genetic diseases. I think there are rare variants that increase the risk by 30%, but that's a far cry from causing disease. The poster child for rare variants is the APOE epslion-4 variant, discovered in one of the first GWAS ...

25% misdiagnosis rate in NIH intramural study @Milo it's worth noting that the NIH only studied people with a post-infectious onset. I wouldn't be surprised if the misdiagnosis rate was very much higher for people with a gradual onset. But I'm not aware of any data on that. I'm pretty sure that...

From DNA to drug development How studies like DecodeME lead to progress in diseases – five success stories How do you find treatments for a disease like ME/CFS, where nothing is known for sure about its causes? One way scientists can now look for answers is with very large DNA studies...

Happily, the NIH in house study is already making a good start on this. They have probably the most sophisticated diagnostic setup in the world and I'm fairly sure it includes whole genome sequencing. But I think their misdiagnosis rate is around 25%. So most remain with an ME/CFS diagnosis...

Thanks. @Snow Leopard I think I'm being a bit dim here — what, exactly, is the common purpose? I suspect most of us are not is up as you are on exercise muscle/fatigue/neurological stuff. but do we actually know that? One of the links goes to a study with just 16 fibromyalgia patients and I am...

That's very interesting. How do we know this, and does this apply a common pathology to fatiguing disorders?

part 2, some issues So far so good. However, given that the finding isn't specific to ME/CFS, there is a question as to its significance and I think there has been a little overreach here. The title says "hand grip strength and fatigability: correlation with clinical parameters and diagnostic...

Commentary: strong on objective measurement of fatigability, other claims are weak What I like about this is that it builds on previous work and the proven, reproducible Handgrip Strength test (HGS) to develop a broad measure of muscle fatigability. As opposed to the subjective experience of...

What does this tell us? Hold on there! This is a second study with n=9 and using an old-generation "noisy" tracer as a proxy of inflammation. We can surely safely conclude nothing either way. Pleny of neuoimagers (such as Chris Chambers) think the whole field struggles because there is so much...

I think this is the central journalistic flaw and why it was a fundamentally biased piece. Of course, case studies and interviews are a really powerful way to communicate. But if you're going to tackle controversial area you need a case study from both sides. Instead they started with Paul...

Merged thread. Ten minute segment on Newnight looking at the 'controversy' over how to treat LC and ME/CFS, but isn't very balanced and gives the impression (by focusing on the opinion of medics, not evidence) that patients just need to exercise and tackle their fears. Starts at 31 mins...

How many have long covid? And how many have something with symptoms as severe as mecfs? Yes, seems to be a lot less than you'd expect for glandular fever, I think that typically around 10% with GF meet CFS criteria at six months? However, there is a major caveat. Like a lot of "Long Covid"...

The ONS survey asked about impact on daily activities: no impact, limited a little or limited a lot. Only one in five of the 14% of people who had at least one symptom at 12 weeks (which gave the headline figure) said the daily activities were limited a lot. So, that works out at 3% of people...