Is there any positive upcoming news???

[Hopeful1976]

Dude, millions is nothing! Nothing! If you want progress in this illness I would say nothing less than 100 million$, but more like 1 billion. If we saw 100 million$ allotted between various researchers tomorrow, RFAs and not just used /squandered by national agencies on their own studies, I would definitely try and hang on longer.

I don’t know what stage of illness you’re at. If you have the ability to walk and travel , or think and talk for a decent portion of the day, organize civil disobedience protests like ACT UP. Nothing will happen in this illness without agitation.

If you are too sick to, I understand. That’s where I’m at. But I wish that a year ago when I could have, I spent time protesting and actually working on getting funding for this disease

Sorry, but a billion - that's never going to happen is it... Does that mean no cure or treatment will be found??

 

[frozenborderline]

Sorry, but a billion - that's never going to happen is it... Does that mean no cure or treatment will be found??

There are two million ppl in the US with this disease. AIDS activists achieved a huge ramp up in funding with a lot of actions that had relatively small amount of people. I said 100 million would probably get results but a billion would be better and more fair. I predict we won’t see results in the next five years without at least 100 million this is true.

But again, it’s something that has to be demanded. I may be too sick to protest but I have a hard time believing there’s not 20 people in the two million sick that can do an aggressive, coordinated civil disobedience action at the CDC or NIH.
So yes, things are bleak but not impossible. The sooner ppl realize how bleak they are the sooner people will demand what we deserve and get it. .

 

[frozenborderline]

Sorry, but a billion - that's never going to happen is it... Does that mean no cure or treatment will be found??

I mean, do you know how expensive it is to do a clinical trial, or to make an animal model of a disease , etc ? Or to do brain scanning, or exercise testing.

 

[ljimbo423]

There are two million ppl in the US with this disease.

That's the estimate given. Sadly, I'll bet the number is A LOT higher than that. Due to all those undiagnosed, misdiagnosed, etc. I and many people here were misdiagnosed for years with depression and told our fatigue and pain were caused by depression.

Ironically, a therapist, whose husband had CFS, recognized that I had it. When I took that info to my doctor, he agreed. That was after many years of being misdiagnosed.

 

[frozenborderline]

Sorry, but a billion - that's never going to happen is it... Does that mean no cure or treatment will be found??

at the current rate--I'd say it will take at least forty years to get a cure. It doesn't have to be this way

 

[Jessie 107]

at the current rate--I'd say it will take at least forty years to get a cure. It doesn't have to be this way

Fourty years!! How depressing is that.
I would just like to have treatments that would improve quality of life as I am severely ill

 

[Badpack]

I have seen very little info about the method used, it's some new tech that can supposedly detect infections anywhere in the body, based on finding the DNA of pathogen in the blood. Ron Davis talks about it at timecode 25:50 in this presentation.

From his description of the method, it does not seem likely it would detect partially reactivated latent infections, nor abortive infections, though that's just my guess, I don't know for sure.


Dr Chia is saying we need to test tissue samples to detect the infections in ME/CFS, as the infections are hiding in the tissues, likely as intracellular infections.

There are lots of studies that have found enterovirus in ME/CFS tissue biopsies, but there are almost no studies that have looked for herpesviruses in the tissues. So we have direct evidence for the presence of enterovirus infection in ME/CFS, but we do not have this evidence for herpesvirus. The evidence for herpesvirus comes more from chronically raised IgG levels in ME/CFS, which suggest a herpesvirus infection is going on somewhere in the body.

But we have not pinpointed the locations of the herpesvirus infection, as we have with enterovirus. With enterovirus we know these infections are found in the muscles, gut and brains of ME/CFS patients.

I am very sceptical of chronic infections- They made in my case biopsie from the heart, a leg muscle and the lymphnode- Nothing viral- They only can find an inflamation in the heart what fits with the Beta 2, Musc 2 Autoantibodies!

 

[MonkeyMan]

Fourty years!! How depressing is that.
I would just like to have treatments that would improve quality of life as I am severely ill

No one can say how long it will be till an effective agent is found. Such a discovery could be totally serendipitous and unexpected -- many effective treatments have been discovered quite by accident, often long before the mechanism of disease is understood.

So it could this year, it could be next year, it could be in 5 years, or it could be 40 years from now. No one with a reputation to protect wants to give false hope and then be proven wrong; that's why you're not hearing predictions from the OMF, SMCI, etc on when it will be. (The last prediction I recall was from Ian Lipkin, who in December 2015 said he believes it’s possible to solve ME/CFS in three to five years. But he caveated that with needing the funding to do so. And "solve" is sort of a squishy term, isn't it?)

We have to take the researchers on their word that they are as eager to find an effective treatment as we are. And with Ron Davis' son being severely ill, obviously he has an extremely high incentive to expedite things as quickly as possible. All the researchers know that fame and glory is waiting for the one who first finds an effective treatment.

 

[Hip]

I am very sceptical of chronic infections- They made in my case biopsie from the heart, a leg muscle and the lymphnode- Nothing viral- They only can find an inflamation in the heart what fits with the Beta 2, Musc 2 Autoantibodies!

Did they test for enterovirus?

 

[Badpack]

year - the testet a whole bunch of viruses- including entero, but also all herpes viruses- nothing- only inflamatory cells in the heart biopsis- namly CD 45 RO and a sort of macrophages

 

[Hip]

year - the testet a whole bunch of viruses- including entero, but also all herpes viruses- nothing- only inflamatory cells in the heart biopsis- namly CD 45 RO and a sort of macrophages

Do you know if they tested for enterovirus using the VP1 protein staining, or using PCR?

When Dr Chia tested stomach tissues of ME/CFS patients for enterovirus, he found enterovirus in 82% of patients using the VP1 test, but only 37% of these same patients when using PCR on the stomach tissue biopsy. So PCR is less sensitive.

 

[junkcrap50]

Dr Chia is saying we need to test tissue samples to detect the infections in ME/CFS, as the infections are hiding in the tissues, likely as intracellular infections.

There are lots of studies that have found enterovirus in ME/CFS tissue biopsies, but there are almost no studies that have looked for herpesviruses in the tissues.

I am very sceptical of chronic infections- They made in my case biopsie from the heart, a leg muscle and the lymphnode- Nothing viral- They only can find an inflamation in the heart what fits with the Beta 2, Musc 2 Autoantibodies!

Why don't CFS doctors perform more biopsies as a routine for testing. It seems like none do, except Dr. Chia. @Badpack above seems to be "lucky" where he/she did and can completely (for the most part - didn't biopsy stomach, like Dr. Chia) rule out any viral infections.

What I like about the abortive infection theory is that it offers an explanation of why herpesvirus antivirals take such an extraordinarily long time to work in ME/CFS. Antivirals normally work in a matter of weeks, but in the case of EBV, HHV-6 or CMV associated ME/CFS, Lerner found that it takes 1 or 2 years for the antiviral to take full effect.

Would Vistide or any particular antiviral drug have a better chance of killing the abortive infections? I know of 3 patients who were pretty much "cured" from their CFS by Dr. Peterson and using Vistide. I wonder if it is a more thorough viralcide than typical CFS antivirals.

 

[Hip]

Why don't CFS doctors perform more biopsies as a routine for testing. It seems like none do, except Dr. Chia.

John Chia is always trying to punch home the point that we need to be testing ME/CFS patients' tissues for viruses, not their blood, where very little virus is found.

Would Vistide or any particular antiviral drug have a better chance of killing the abortive infections?

I don't know, but I would not have thought Vistide would have any better effect against the hypothesized abortive infections in ME/CFS, as Valcyte, Vistide and Foscavir — which are the heavy-duty herpesvirus antivirals — all use the same antiviral mechanism of blocking viral DNA synthesis.

As well as abortive infections, other theories suggest there may be partial reactivation of HHV-6 in ME/CFS, which again does not produce any new viral particles.



It's interesting that when you get the rare case of ME/CFS caused by varicella zoster virus reactivation in the nerve ganglia, this form of ME/CFS is sometimes completely cured with just a few weeks treatment of acyclovir or Valtrex. Which is remarkably quick. But that's the normal timescale of antivirals: they work within a couple of weeks.

The difference with VZV reactivation ME/CFS is that this form of ME/CFS is caused by a normal productive infection of VZV (productive infection = one which creates new viral particles). This shows that when you get a productive infection, antivirals work fast.

But ME/CFS associated with enterovirus, EBV, HHV-6 and CMV does not seem to involve much productive infection. So antivirals are very slow to help in these cases.

Dr Chia talks about VZV ME/CFS and its treatment in this video at 6:58. Chia estimates that only around 2% of ME/CFS cases involve VZV reactivation.


By the way, I understand that VZV reactivation is not usually tested for by blood tests, but simply by observation. If you have any shingles blisters (even just one tiny blister), this indicates VZV reactivation, and means that you may respond well to a short course of acyclovir or Valtrex.

 

[frozenborderline]

Fourty years!! How depressing is that.
I would just like to have treatments that would improve quality of life as I am severely ill

i said forty years at the current rate. AIDS cures probably would’ve taken forty years at the rate the research started at. Thankfully activists
aggressively demanded more. I wish that would happen in ME activism. Usually the way research works with complex diseases, I wouldn’t expect there to be serendipitous discoveries without a large evidence base built up first. Even when we knew the causative agent of HIV we needed a lot more time and work to get to a cure. So I wouldn’t expect any serendipitous discoveries soon, unless we get 20x the current funding and build up the evidence base

 

[Pyrrhus]

I understand that VZV reactivation is not usually tested for by blood tests, but simply by observation.

Unfortunately true.
And it appears that most VZV reactivations do not come with any visible sign.

There are many cases of people boosting their immune system only to erupt in shingles blisters.
In these cases, there was likely already VZV reactivation before their immune system was boosted, but the immune system wasn’t strong enough to attack the virus enough to create the visible blisters.

 

[Hip]

And it appears that most VZV reactivations do not come with any visible sign.

Seems like that is often the case.

Did you see the ME/CFS patient case story in the video at 6:58?

It's about a high flying executive that became a severe bedridden ME/CFS patient. Only after 11 months in this bedridden state, did Dr Chia notice two little shingles blisters appearing on this patient. He gave her some acyclovir, and within 3 weeks she was back to full-time work.

But initially she did not have any blisters (or at least none that Chia had spotted), so no evidence of varicella zoster virus reactivation, even though VZV was the basis of her ME/CFS.

Since Chia says around 2% of patients haev VZV ME/CFS, it makes you wonder how many people on this forum might be cured just by a course of acyclovir for a few weeks.

 

[Pyrrhus]

It's about a high flying executive that became a severe bedridden ME/CFS patient. Only after 11 months in this bedridden state, did Dr Chia notice two little shingles blisters appearing on this patient. He gave her some acyclovir, and within 3 weeks she was back to full-time work.

Wow. I’m jealous. Wish I could be cured in 3 weeks!

 

[msf]

All this virus testing talk...What do people have against bacteria? Also, I think lots of good stuff is happening, such as DCA and so on, it's just a question of refining the approach. And the poster that said that microbiome research is a dead end couldn't have been more wrong, the fact that there is a consensus about this amongst top researchers now should tell you something.

 

[frozenborderline]

All this virus testing talk...What do people have against bacteria? Also, I think lots of good stuff is happening, such as DCA and so on, it's just a question of refining the approach. And the poster that said that microbiome research is a dead end couldn't have been more wrong, the fact that there is a consensus about this amongst top researchers now should tell you something.

DCA hasn't even been tested in a single placebo controlled trial as far as I know. I think that there are smart researchers working on this disease but people are continually underestimating the extent to which funding is an obstacle to research speed. Especially when it comes to testing drugs and developing animal models and we're nowhere even near that (important) stage yet. I feel the need to continually remind people of this not to make them give up hope but because without a realistic assessment of where we're at, no action can be taken.

I am disturbed that there are really no ME/CFS groups that do a lot of direct action that includes civil disobedience. I know that severe ME really precludes doing this but I would think that out of the two million people with this illness and also allies, that there would be some people who could handle that. If I ever recover even fifty percent or so, this is what I will focus on. People are putting too much pressure on researchers who are working with almost nothing... rather than putting pressure on the NIH and CDC. Often with no perspective of how expensive it is to run studies. And we don't just need more money to research groups in the field, there need to be more researchers (especially for diversity of ideas) and thus there needs to be enticement in the form of RFAs. I would repeat that I would estimate the $$ amount as the one that starts getting big findings in next few years to start around 100 million but really should be higher. But I wont lie--100 million would give me hope.

 

[frozenborderline]

As far as there being a consensus on the microbiome--if you mean "somethings wrong with it" sure... as far as there being a specific consensus about which species are missing or w/e, I'm not yet aware of that being the case. "something's wrong with the microbiome" is way too broad to really be meaningful, given how the microbiome is probably implicated in every disease process