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Could you collect bone marrow post mortum and still get a useful sample? Because ME/CFS patients die every week, many of which would donate their bodies to science if there is someone wanting to take the body and do more detailed studies on it. When it comes to invasive tests like this having...

This is quite interesting because its been proposed as a potential therapeutic and something that is low in ME/CFS patients in a number of (too small) studies. If some part of the condition involves an infection in the gut then sodium butyrate might be quite counterproductive. It might make us...

I remember quite a lot of this discussion and most of it was all about misdiagnosis of Long Covid and ME/CFS patients with FND. There seem to be a push from the healthcare systems, especially the UK, to start to diagnose patients with FND instead of LC or ME and there were a lot of people...

Its 6 hours 30 minutes and in person only. Not accessible to people with ME/CFS.

Yes there is no approval for Novavax this time. Not that the prior approvals were all that helpful they were often delayed by half a year or more.

The MEA in generally seems to exclude sufferers a lot. Most of its questionaries ask if you have been diagnosed with ME (most patients as know have not) and then if its no you get unceremoniously dumped out. They don't even want to hear from those with bad local NHS services. They certainly...

Just like I fear the eye of my local NHS as they have the ability to do a lot of harm, I am now feeling increasing fear about what government is going to do to us. State violence feels highly likely and many of us are barely surviving on minimal disability income as is without medical care...

There is a giant gulf of a gap that has appeared on the various studies on prevalence. The research studies show very high prevalences especially this year, the meta studies of those equally show its not an isolated one off but something many studies are finding. Then you have the population...

They don't even recommend masks now. Its worse I think because they now use surgical masks instead of FFP3's for known concerns like TB after the standard was changed in 2020 to conserve the FFP3 masks. Mitigations have gone backwards and once again we find cochrane is a large part responsible...

I don't think the paper is out yet. I am always a bit concerned about highly advertised results like this when the science isn't the lead and then the media marketing is based on it. Hopefully the paper matches the marketing.

They just also announced that Long Covid now has the highest DALY impact in the country. They do know this is just continuing to increase right? Its just been horrifying watching the Covid/Long Covid misinformation campaigns followed by all the data suppression and then just silence while this...

The real story here is that Long Covid (alongside ME/CFS) patients do not receive normal healthcare, we get triaged out by the GPs intentionally whether its the right diagnosis or not. So when we come down with other conditions if they are fatal we die from them, or we live with yet another...

Also ought to come with a warning that it wont actually change how they behave anyway. They aren't going to do any of the hard things that patients diligently raise in the text section they give them. Its purpose is to waste more of your energy not as a mechanism to address their failures in the...

I fear such a service, as a servere patient I consider one of the most important things I do is hiding from the NHS as much as I can. It isn't going to ever diagnose me and all its ever really done is harm me. I want there to be a service available if I loose the ability to digest food to at...

66 people in RCT feels like enough to tell us if this really works. What I fear is its not big enough to move the needle with the NHS, NICE and other bodies and they will want something more substantial. Going bigger isn't warranted yet but its 3 years for this trial and then another 3 years for...

As part of my GPs attempts to get my on GLP-1 I did a couple of calls with nutritionists. They have zero knowledge on the disease and all the various bad responses I have to various foods just blew their conceptual models of food response completely apart, they had no idea how to handle all of...

As we heard in the roundtable yesterday the fastest the NIH et el can do n the USA is about 18 months. Doubt any of this would resolve quicker with the EU than 12 months. But I also doubt the patient community has 850k to fund this project its just too much for one independent project. Their...

If I was from government and didn't know much about the state of research and I listened to those two sessions I would be really confused. I have people telling me the disease can be cured with stents, with Maraviroc, with rehab and anti inflammatories, auto immune drugs and peptides among...

Daratumumab might genuinely be a lucky break treatment that really works, but then I have thought this for a number of trials that happened on a small scale and the moment they went mid size they fail. Maybe this is the one, my issue is it fits the same pattern we have seen many times. Its a...

Given we now have many deaths associated and officially registered by coroners any description of the disease that doesn't involve the possible outcome of death is incomplete.