Research news from Bhupesh Prusty

In theory.

But i dont have any. Staying in bed doesnt relieve my symptoms, its reduces them but i still have plenty at rest, & pain relief is hard to come by when they think the pain is 'functional'. They want us all to meditate the pain away now.
Access to pain relief is entirely dependant on the attitude of your GP, & effective relief extremely hard to come by for many. Whereas i dont imagine anyone with a biologically proven disease has to convince the Dr they are actually in pain.

I have a friend with MS & her drs bend over backwards trying to help her. Not so for the vast majority of us.

Edit: in addition if you push yr GP too hard you are likely to get a referral to pain clinic/CFS clinic who will be trying to manipulate you into having GET by another name & gaslighting CBT, and when you decline you at serious risk of having the benefits you rely on removed because then you are seen as someone who could get better but doesnt want to/is uncompliant. I dont imagine anyone with MS or Parkinsons would have any idea of the ordeal and tightrope you walk on a visit to the GP to ask for help with symptoms.
I learned long ago it was better to live with it than risk the 'punishment' of seeking help.

 

Yes. Point taken.

Some of us are lucky: my GP has been supportive and happy to let me try out whatever pain relief I think appropriate. Mainly because he half-read something about mitochondria and adopted a biosomaticist stance.

But it shouldn’t be a lottery like that, and advocacy in the meantime should serve those pwME whose doctors have unhelpful attitudes.

 

gosh, how completely wonderful.

 

Precarious, though. He was about 100 years old when I first registered with the practice, and that was 20 years ago.

 

At a very minimum, 10% of my suffering is due to lack of acceptance as a biological disease.

 

eek. i hope his successor is of a like mind

 

I'm interested in his findings and the science. I don't get that excited anymore. What are the chances of my GP prescribing a medication for what is causing this signaling dysfunction?

It will most likely apply to a subgroup of patients.

 

I know a person with inside information who told me yes, there are subgroups. Autoimmunity has to be ruled out first. That's all they could tell me.

 

Leaving aside what it might mean for therapies, one other outcome if this is the explanation would, in theory, be being allowed to donate blood !! (not that that's anyone's priority).

I.e. the idea being that the something-in-the-blood (SITB) that causes the badness is there in patients and healthies at normal levels in both. Hence why it's not been detected as a biomarker. It's the thing that patients don't have to regulate the activity of the SITB in cells that causes the problem. You can filter out SITB from plasma (50-70 kDa range as I recall Ron Davis had said) — but you would have the same effect as filtering by instead adding back the something-missing-from-the-blood (SMFB).

It then doesn't matter if an ME patient donates blood, the recipient already has their own SMFB and is simply getting a standard blood concentration of SITB, so no effect on their physiology.

I'm guessing SMFB regulates the uptake of SITB into cells, though it could involve its excretion as well or instead. From his prior work it might be a microRNA (miR-30 family) or maybe a protein in the pathway related to the presence of that miRNA. (I think he did say "protein" in the recent interview.)

 

I really can't stress enough how much this announcement has messed me up mentally. I've not been this anxious since the NICE guideline furore.

Really wish he'd waited til the conference, as I can't imagine I'm the only one who's been affected like this.

 

I know how you feel. I think there is hope to hold out for with the NIH paper, if Prusty is a let down. I'm convinced Nath and his team have found some important abnormalities that there might be potential therapies for. I think I've watched all of his videos on YouTube talking with other researchers about things he's seen.

 

Both of yuo i'm so sory my heart goes out to you its really crap.
This is why i was cross in my earlier posts, he really needs to understand the impact he is having.

yes my approach entirely these days too Trish. Its the only way to protect ourselves. I'll believe it when i see it.

 

I’ve been around for far too long to get excited about any announcement. Call me jaded but none of previous BREAKING NEWS moments have panned out so why get my expectations up.

 

Agreed on the sheer size of disability that needs to be attributed to actions of others. As if the disability size wasn't already huge enough with ME to begin with. You can neither easily hide it longish-term without taking people criticising you for things caused by the illness as personal slights, and if you tell people you get added nonsense. It's truly amazing what people are actually like 'when they think others aren't watching' or more accurately for ME 'when given permission by society who will dismiss you telling on them as us being bad witnesses or oversensitive': I know how many people are plain bigots/bullies charading now and it is shocking, and I didn't see them coming.

Also note that if something happens as a biomarker then it at last releases us to have access to medical treatment for the other conditions that we have - it seems to be little-understood that lots of us had, by the hand of the 2007 guidelines and probably secret ideology before that, basically been cast out to be treated or heard for anything. And the interaction of ME with comorbidities is another devastating one.

Gut....... maybe 70% + of the disability in those who have had it badly enough for long enough, certainly those from the unlucky generations with bad support, was utterly unnecessary and created by this bigotry and attitude. I can't sadly see some of them changing they are so wedded to it, but boy would it begin to transform it if it were treated similarly to other illnesses that mightn't have good treatments but aren't working against the individual.

 

and society prevents it - I've had individuals direcly ensuring I could neither get peace nor rest, to an extreme level, for most of my being ill. In fact I find it hard to name a point in decades where I didn't have at least one individual nearby who ensured I never had the rest 'normals' did, just due to sheer callousness and bigotry/being misinformed by Chalder-type videos/mantras.

The idea my life had more rest than those without th condition is nonsense, and a shocking indictment on what BPS caused in society and yes it feels like a version of populism/incitement of stoking what is already there, those who have their own issues looking for something they have permission to outlet on and so on.

 

I quite agree that just a biomarker could be transformative. But deep down (and I know I'm not the worst off) I want to know I won't spent the rest of my life in this bed. I really don't like that prusty is making big claims about treatments and recovery before he has even unveiled his theory/evidence.

 

Even the big breakthroughs we've had(Naviaux paper?) have let to nothing in terms of treatment so far. So I'd expect something in that sphere if it's anything at all. What does give me some hope is that more and more research seems to be carried out. We've just had about 7 mil devoted to ME in the Netherlands. I've seen several grants come by from other places.

DecodeME is up and running. The intramural studies are gonna be published which my give some other leads for people to work on.

Progress is slow, but if I compare what's happening now to what was happening when these forums were opened it's just an entirely different world. We've had to fight tooth and nail for it and we will have to keep on fighting, but progress is definitely being made.

 

And what is the test for subgroups? And can autoimmunity be diagnosed?

This is a great thread. I really do not appreciate the 'teasing.' The life of patients is unrelenting hell; they and families sit on the edge of chairs hoping for help and never any forthcoming. I have concluded that the large majority of researchers do not truly understand this illness and what the real daily reality is for the patient: if they did, they might behave differently and perhaps more like the now deceased Dr. Kerr, a man of humility and dignity and empathy.