3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, 7th Sept 2019

Now that makes rational sense! Thanks.

 

Thank you!

 

This rate of genetic problem in IDO2 for controls is much higher than previously reported, initially from population figures (not controls) a rate of more like 40% was reported. This can easily change how we view IDO2. The results still appear to be significant, but start looking more like a minor risk factor than a potential cause. I do hope that controls were not genetically related to the patients though, this could skew the results.

PS Its starting to look like IDO2 is an old defunct gene for most people. I would also like to know about whether patients are more likely to have two broken IDO2 genes compared to controls.

 

Do we know what the five subsets are?

 

Thanks. I'll check that out later.

 

For people who are frustrated with the current pace of change, I have bad news for you. It’s bad, and it’s not some neat scientific problem that can be worked out by a few intrepid and curious scientists. At the current rate I wager we will not see a cure for 50 to sixty years. What made fast change happen in aids treatment was very aggressive civil disobedience actions and public pressure on the fda , cdc, etc. while people bicker over various advocacy groups use of various diagnostic criteria for ME, etc , meanwhile absolutely nobody , even advocates I admire (this is not a personal attack on anyone) is holding anybody’s feet to the fire with regard to funding on this illness.

 

Yes, Debored, yes. What should be done? This "current pace" is destroying the hope of many young people. Every one has a different theory. Where can you get with that? But if things continue as they are now, it will be 60 years and more before anything happens. I too am not critical of anyone. But there just isn't enough cash or brains on this.

Lots of folks are very discouraged, and even very unsettled by this lack of real results. It is actually frightening listening to the patients and how they feel.

 

I have participated in a number of long debates on this. Its been a problem as far back as I can recall.

Not having a diagnostic test is a huge impediment to credibility.

Having conflicting and misleading diagnostic definitions does not help.

The problem that most doctors do not read non-clinical research means they are badly informed.

However the big issue, to me, is that most with HIV are still fully functional, and can advocate a lot. So can friends and family and celebrities. Visibly seeing many people die changes things. Having HIV transfer to the general population, and lead to rises in associated diseases like TB, also drags in many of the rich and powerful. We have none of that. 25% or so are housebound or worse. Most of the rest are just struggling to survive. Our community is not a match for the HIV community. Our issues are different.

There are a lot of diagnostic tests in development. One that really works will help advocacy a lot. It will also accelerate research.

Until the last few years, a big demonstration for ME or CFS had less than twenty people on a rare basis. We need thousands on a regular basis. Its improving, but slowly, largely because of the rise in internet advocacy and the creation of national and global advocacy movements.

We don't have half a century anyway. My take is that we have ten to twenty years to make major advances or research funding is going to go into a long term downturn due to rising global economic issues, a whole other discussion. We have to have something to show before that happens.

 

This is a point I have felt compelled to make many times now when reading some of the discussion here, but I have always decided to let sleeping dogs lie. I have not seen anyone else bring this issue up, so my apologies if I missed it. This does matter, though, more than anything, at least in the context of this disease. The ability to make change, especially for a disease on the periphery of social acceptance and awareness is contingent on social and economic conditions that we have always had, to one degree or another, but will not have in a future that is very likely sooner than any of us can really fathom. I personally do not think a cure will be developed within the time frame required. Research takes too long, we're too far behind, and too widely derided. And I am skeptical that a world facing crushing dislocation and mass migration on a scale never before seen will want to continue to pay for the types of expensive drugs on which we're likely to need to maintain some semblance of wellness. But even if those assumptions are wrong, the awareness of the broader context in which advocacy for this disease takes place should inform discussion of how to think about progress or lack thereof in research and advocacy. That it doesn't seem to be happening is understandable, but surreal.

 

In my opion it is one of the PEM symptoms.

 

For me it’s eirher a movement develops that pushes these government agencies aggressively for more funding, or Dignitas. I’m afraid I really can’t get that excited about studies which have mostly small, non replicable results , or have been done before thirty years ago. We’re screwed unless there are people that can fight for us.

 

Yes, sicker than aids patients , and less of us die , so there’s different PR, but don’t see how the same strategies couldn’t work

 

For one, there are more of us. If the mild and moderate, ans those very few that recover, and some allies, could form a coalition ...

 

We are also "screwed" if folks keep saying 'fatigue.' Fatigue arises only after the body has been tormented with an array of intolerable symptoms: flu feeling, toxic feeling, sick feeling, poisoned feeling, sense of dying feeling, weakness, inability to stand or walk, and the indescribable PEM. As I stated elsewhere here, after listening to Dr Moreau on a local radio station I was truly discouraged. For the emphasis was largely on fatigue, extreme fatigue. As I stated, I call the radio station to try to broaden the spectrum of symptoms. Imagine needing to do this with any other illness. As for governments, I don't know what to say. Canada gave Dr Moreau 1.4 million (over 5 years) now is that not 3$ per ME patient in Canada? I hate to say this because it is very invasive, but more pictures of the 25% are required, and ceasing to use the word CFS or fatigue.

 

I also feel that Dr. Moreau should change his language regarding 'fatigue' and 'mental fogginess'.

 

At least AIDS patients died.

Yes, I said that, because if this is really the hockey stick of another epidemic that just didn't get paid attention to but has broadly infected 8-14% of the population whose current condition is a latent infection, or whose illness is sub-clinical, or if indeed this is a retrovirus that has infected the germline...

Then not just the 1% known to have ME are 'screwed,' humanity is screwed.

It is a problem that won't go away that will make all other problems worse, like the climate crisis, the longer it goes ignored, the greater the consequences and more expensive, if not impossible, to solve.

Maureen Hanson: "we need to tell the public that they need to worry about ME"


"I suspect there is a central cause of the disease, I agree with Maureen....ultimately we want to figure out what that organism is and get rid of it. Many people are trying to sort that out." Ron Davis

 

You are correct Stuart. Remember JFKennedy; he set a time line for getting to the moon. He set a time line and it was adhered to. To some extent this has been done with AIDS too, but here there is no time line set, and this monstrous disease needs one. Otherwise, the researchers are just stretching their grants out, reapplying and on it goes. I know Ron and Hanson sense urgency: don't know about the others, but a time line is not a bad idea, as well as narrowing down and eliminating some of the 'problems" and focusing more precisely. Imagine all the challenges of finding a way to reach the moon; surely, this horrific illness (which does kill by suicide) should be treated with urgency too.And I was told by one ME researcher that the number of young people acquiring this is increasing.

 

Not to say ME doesn't kill, it just doesn't do it in a way that makes it apparent as AIDS does, dramatically, visibly. The COD given is rarely ME, but about 1/4 cardiac related, 1/4 cancer with high rates of leukemia and lymphoma, and 1/4 suicide.

When we get sick enough, we drop out of school, out of jobs, out of family, friends, and community, we disappear. Now with the Internet and forums when we finally disappear altogether we get a blue rose posted with a notice, and the list grows and grows.

If it is true that more young people are showing up with ME, I would wonder if it is vertical transmission, that parents might be hosts. Something is causing ever increasing rates of chronic diseases in school aged children which is simply unsustainable. Yet there seems to be nothing being done about it.

It seems we live in an era when nobody wants to find the causal agents for anything, that is just too contentious and problematic as someones interests will be negatively effected, so now we just seem to discuss the damage done and how to minimize its effects. This is also unsustainable, but it's the path we're on.