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Perhaps that is true if Daratumumab works but it may well point the way to other treatments with a different mechanism that are more universally effective.

Every damn treatment that trends - mestinon, ldn, this, whatever - always seems to come with reports of worsening as well as improvement. At least we will have the data from the placebo controlled Rapamycin study and the lift ldn mestinon study in the next year or two.

It's not the first time I've seen him make it either.

I'll get my chequebook! Do you think that Jackie is likely to get that kind of funding once all of our DecodeME etc ducks have lined up over the course of the next little while?

Forgive me if I missed this in your paper, but how would we establish whether this is the case?

Younger says that a 72% response rate is unlikely because we know the ME/CFS label contains 3 different pathologies. Unless I have missed something major, or he has seen advance results I haven't, we don't know anything of the sort.

IMO this would be the perfect response/approach

This is one of the creepiest things about the whole situation imo. It is never mentioned in the glowing discourse around him unless its skirted over.

This is the thing I find most chilling about modern medical culture. If you throw a stone you hit a story of someone who's cancer or stroke or MS or whatever was missed because their doctors slickly dismissed their concerns and didn't do the necessary tests. So it isn't just us that bear the...

When your theories have been unquestionable in medical discourse for decades any dissent is going to feel like a personal attack. And the thing is no matter how politely we dissent, we are still saying that their entire career is built on a house of cards. Of course the stigmatising and...

Well, I clicked on this thread without thinking and I now want to be sick. I cannot say this strongly enough: this attitude is the reason I am severely disabled. This prejudice and the weird culture of silence and patient manipulation it creates are the reason my GP thought the way to help me...

Just watched Chris Ponting's presentation. He seemed genuinely angry, and quite right too. A very good speech in my opinion and always very glad to have him in our corner.

I suppose the money will have to come from the Norwegian government or from charities/fundraising then.

That's disturbing. So they don't stand to reap a sustained profit if it works because biosimilars might flood the market in a few years?

Horrific.

Moved posts Do drug companies typically provide the drugs these sorts of experimental trials? Iirc for your RA rituximab trial you had to buy it yourself. I am thinking of the Daratumumab phase 2s struggle to get funding, and wonder if Janssen might be more open to persuasion to discount the...

I think this is a situation where it is frustrating that the forum hasn't got a 'direct line' to a lot of researchers. It would be very useful to know what F&M have already tried, ditto whether RD can be useful here. This feels like such an open goal for pharma/govts funding wise it's so...

You have said before that the 'hypothesis destroying' experiments that can total your hypothesis and help you build a better one might be drug trials in this scenario. Without speculating on what the drug would be, how might such trials play out? I'm interested in the mechanics and organisation...

I know Ron Davis' team were doing this kind of work with medical records regarding potential drugs.

The issue is that the recent piece on Simon Wessely was front loaded with so many poorly evidenced claims of irrefutable biological evidence that left the following discussion (which to be honest I only skimmed but it looked much better) of Wessely's many misdeeds vunerable to easy attack from...