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Different starter pathways is interesting. But how could severe ME have a different starter pathway if some people start off mild and stay that way for many years before becoming severe, and some lucky people who have been severe for many years recover to a moderate or mild level over time? And...

This is a fascinating finding and I hope it is the first step on a road to getting all of us some answers, but I do find the fact it wasn't replicated in severe ME worrying in a personal level. I'm sure i'm not the only person who is concerned that when the severe state is triggered something...

Except they don't have effective treatments, they have a bag of magic beans and a very nice invisible shirt. If we have scientific proof of physical processes going awry and causing the symptoms and the opportunity to treat them the situation changes considerably.

I understand your pessimism here, and maybe a billion is a stretch but if, for example, DecodeME pans out and in a year or a few years after sequence we have possible biomarkets and drug targets, surely governments might see sense and invest considering how widespread post covid ME is, based on...

Hi, Chris - From my perspective, typing speed and accuracy are very valuable measurements to look into. I am a writer and like probably Every other writer in the world I was working on a book during 2020. This happened to be the year that I deteriorated From mild to severe (due to GET...

Perhaps. But he has certainly been smart enough to distance himself from ME in the last decade. If he stays and a biomarker/treatment is found he is going to find himself at the centre of a media firestorm.

Perhaps, but I take serious issue with you saying that it is 'fair' for patients to be ignored for using the wrong name. I'm not really interested in a discussion of the etiology as I broadly agree with you, I just don't think patients should be punished for not perfectly navigating the mess...

Why should the onus be on us to use the precisely correct term to prove we are good little patients and not hysterical secondary gain seekers? The idea that our pleas for help being disregarded because we said 'ME' not 'ME/CFS' could ever be fair is absolutely ludicrous. We do not have an...

The long covid clinic I was under was Wesselyite through and through. Hopefully DecodeME points the way and the good SirDoctorProfessor quietly retires into irrelevance before he is pushed out. I mean I'd rather see him in the dock for what he's done to so many of us but I think an inquiry will...

This, I think, is a huge problem with no clear solution. The amount of stigma that needs to be present for someone like yourself to be afraid of being labelled 'pro-ME' is mind blowing. I assume you were never accused of being 'pro-RA' by your colleagues. Being 'pro' sufferers of most diseases...

The repeated use of 'chronic fatigue syndrome' and the other mental health conditions mentioned don't exactly fill me with hope...

Is anyone watching? I registered but can't spare the spoons to watch right now.

Yes there are absolutely studies that could do with replication attempts for this and other reasons. I think this would be a good use of hypothetical funding. I agree that DecodeME and Precision Life will hopefully point the way, but perhaps we should consider what the best course of action is...

My experience with a private rheumatologist was that he listened to my story of worsening through exercise, prescribed GET which i declined, did a bunch of tests and went on a charming monologue about how he saw lots of children with over protective parents and mobility aids they didn't need. He...

Alright, tell me why this is too good to be true... Okay done a bit more reading before I hit post. This looks genuinely promising to my layman's eye. Did anyone catch the part in one of their maps where they claim to have identified 7 prospective drugs for repurposing?

I would want to talk about how easy it can be to worsen a mild case into a severe one with intense exercise and hard work. How you can destroy your functioning without realising it because it sort of slowly ebbs away and then all collapses at once. I would want a focus on how GET can cause a...

Just to clarify, is this a replication of the Australian studies from Griffith Uni we were discussing/criticising a few weeks back for having no replication attempts? Becuase if so thats big.

Why on earth wasn't this their target group in the first place given that they claim it works for ME? Honestly if ampligen turns out to be beneficial for a significant amount of pwME/LC... the amout this company have fumbled is just beyond belief.

Yes i apologise I realised my post was pulling the thread off topic after mods had already moved posts.

Unbelievable. In the 'what can be learned from ME and related conditions talk' they have Nath as the sole voice of ME researchers. The NIH is still not reaching out to the wider post viral research community and at this point there are no excuses anymore.