Research news from Bhupesh Prusty

Yes - I think this is what is implied. I'm really not following what he's trying to say. Thought maybe I've missed something.

 

My impression is that he is pursuing something that could be promising and doesn't want to give false hope if it's a waste of time?

We really need a formalized always-on patient engagement process for this. Research on ME cannot progress much without patient input and although this is a way around it, it clearly needs more structure.

 

I wonder if he wants to communicate findings less formally than in a publication? On one hand, this could reduce the time it takes for findings to percolate through to us, simply because there are fewer hoops to jump through than normal scientific publishing – this might be important in raising the spirits of a community which has been waiting decades, as well as giving us a way to contact him directly. On the other hand, being seen to publish on Twitter presumably does put his academic credibility at risk, because all the usual processes of review are absent.

Having said that, though, there is now an established tradition of reputable researchers communicating interim results via disease-specific conferences and webinars, so...

 

Yes, I think that's perhaps what he means. I'm not sure Twitter is the best approach for anyone.

If he really wants to engage with patients, could he not be invited to join the forum?

 

I guess he's worried that someone is going to steal his ideas?

 

Not as far as we are aware. Of course most people sign up using a pseudonym, so there is no guarantee that we would know for certain if he chose to do that.

Of course, although I feel that would probably come best from forum members, rather than the official forum account.

 

I expect others may have as well, but I've tweeted him with an invitation to join us.

 

He responded, but not favourably. Don't want to be too pushy...

https://twitter.com/user/status/1271372272557850624


https://twitter.com/user/status/1271372752100847617

 

But it would take the same amount of time as it would to participate on Twitter? Or if he wants to do twitter as well, posting just a message here would take a couple of minutes & he wouldn’t have to reply at all or could reply only when he comes back...

At first I was really happy that he’s giving out bits of information on twitter because I understand publishing takes a long time. But at the same time, I have become concerned at the way he asks questions of pwme on Twitter regarding their symptoms / blood test results / things they’ve noticed or correlations. I’m sure he knows that isn’t the right way to do things - even for preliminary findings, due to the bias involved in picking the sample. He just won’t be able to draw conclusions from that or settle his hypotheses.

Or sourcing a very small Number of samples and then telling pwme on Twitter about it. I just don’t know how to react to that sort of news because I can’t deal with false hope at the moment, and would rather wait and know that what he’s doing really is right.

I just don’t think Twitter is the right way to do these things above although of course we all want to know.. the yearly press conferences are a good way to talk about findings..

 

Personally I think he's quite genuine, and wants to help, but I agree with your points @lunarainbows. I'm glad he's working on it, but I'm trying not to get too wrapped up in what he tweets.

 

Yes, he seems genuine, but I'm concerned in the way he is going about engagning with patients. Even annecodtal data/evidence is best collected in an appropriate manner.

 

https://twitter.com/user/status/1271390061951582208


@Jonathan Edwards what do you think about his idea of innate immune system dysfunction?

 

I understand neurological disorders of the nervous system, but where is the evidence that pwME have 'neurological damages'?

 

Again, I'm not sure why putting forward these grand theories is helpful. It's simply a vague hypothesis that links various strands of ME/CFS research.

 

It could be a valid explanation for a subset. Hopefully Prusty can keep a cool head and not let attention from patients trigger excessive confidence.

 

It's a general theory behind all of it. It would explain why not only so many viruses but some bacteria as well lead to a similar state of chronic illness, with some of a pathogen's characteristics but an underlying sickness response as well. It could even explain why things like major bodily trauma and burns can cause similar illness, as Ron Tompkins noticed. Humans are in constant contact with pathogens we can deal with but in a weakened state they are opportunistic and likely cause a similar outcome.

I've been arriving at the same conclusions lately. And thinking about how it actually explains some of the things our BPS overlords noticed incorrectly. It also explains why prevalence seems on the rise, with a globalized world and food and items coming from all over the world, the chances of stumbling on a pathogen with the right features increases. A century ago, most people never traveled and rarely came in contact with pathogens from other areas of the world.

And it would actually explain the increased risk factors in some personality traits that are actually a misreading of the situation. Ambitious people with busy lives are simply more likely to not allow time to the infection to clear itself entirely. Pushing against the illness is probably the worst possible thing to do and obviously people who are not likely to be the resting type will fare worse. As do people living in lower socioeconomic status, they simply don't have a choice to keep working even if they are ill.

It also explains what was noted to be a "urban" disease of the modern fast pace of life. The same thing happens but it goes entirely unnoticed in people who aren't in this environment, which happens to be the one eminent psychiatrists live and work. It's a similar feature to how only outbreaks in medical settings were noticed, not because they occur more but because they happen where physicians can notice them, instead of being randomly scattered. People are expected to be busy and active and work work work. This goes against how the body deals with infections, which is to require rest so the body's resources can be allocated to the immune system. This explains the dysautonomia: it's meant to keep you horizontal. And the fatigue. Same idea: rest, it's how your immune system can fight.

It's probably mostly dependent on chance, where the pathogens lands, how much time it has to multiply before the immune system chances upon a location of infection. Pathogens are meant to be hard to find and it follows that anything that has mastered the ability to hide from the immune system would be quite good at hiding from human technology. The nervous system is an obvious place, hence the high prevalence of neurological symptoms.

I'm really getting to the point where it may actually explain most chronic illnesses. Not 90% but something like 60-70%. That the body needs time to fight infections but everything our society is built for makes that impossible. So the problem worsens, it grows. And it has been effectively buried by the BPS ideology and so grows even more out of control, with more people getting more opportunities to come across pathogens with the right features, likely weakened from pollution and various other things attacking the immune system, and unable to heal because of the obsession that has been built over psychogenic causes, advising to move move move.

That would likely make most chronic illnesses mainly iatrogenic, made significantly worse by medical neglect and denial. Medicine does not cause the illness but it amplifies it, makes it worse, makes it grow, all largely because of psychosomatic ideology that pushes exactly the worst possible solution to a problem they completely misunderstand.

Which would frankly make psychosomatic ideology one of the single most destructive ideology in human history. It is, after all, political in nature and origin, borrows strongly from just-world fallacy where good people are healthy and bad people are ill.

 

It doesn't mean anything to me as an immunologist.
Vague statements like this do not tend to get us anywhere.

 

What kind of problems can dysfunction of the innate immune system produce?

 

You might include familial Mediterranean fever, macrophage activation syndrome, diffuse intravascular coagulation, hereditary angioedema... all sorts of things can occur but none of them seem very relevant to ME (although I can think of at least two forum members who may turn out to have unknown but related disorders).