NIH isn't adequately funding CFS viral research because they believe the cause is unknown and this needs to change

[Viala]

Hillary Johson's book Osler's web said they even misdirected the paltry $1 million research funds and spent them on office parties and vacations.

I imagine that's probably what happened with covid research money.

 

[SWAlexander]

I imagine that's probably what happened with covid research money.

We don´t know yet. Whatever paper we read (about any research), we should look for inconsistencies. Also reading the references if they correspond with the now published paper.

 

[linusbert]

I don´t think this is the whole reason. Remember how much money was provided for Covid research and nearly nothing came out of it?
Research became quite unreliable. I have found many papers with contradictory or misleading references.

This paper was a wake up when I thought I´m not reading or understanding the paper correctly:

Medicine is plagued by untrustworthy clinical trials. How many studies are faked or flawed?​

https://www.nature.com/articles/d41586-023-02299-w?s=03​

that, but its even worse.
they are not only funding money into research that fits their agenda, they are actively manipulating... or in other words, buy publications which produce the outcome they want.

almost all big studies which have driven certain health recommendations have been proven by other small scientistis to have statistical flaws.
for example like out of 10 countries you only pick the 5 which support your hypothesis and the other get thrown out of dataset.
some screw statistics so wild and manipulative its insane, but the crux is, us normal intelligent non scientific educated people cannot see this.

99% of people do it like this, they search for a study on pubmed or somewhere else which supports the claim and use this as proof.
and it does not work like this, because 99% of people do not have the scientific and statistical knowledge to actually read, analyse the study design and discover the statistical bending they did to produce the results.
(and this statistical bending doesnt even have to be on purpose or with mal intent, sometimes its just bias)

i can make arguments for smoking being healthy and deadly at the same time, and all are true. so how to figure out the truth? sometimes it depends on perspective. and sometimes on statistics.

thats why i do not trust any studies anymore and any scientific "experts" , because i know they could be probably be bought or manipulative.
"science" is the new religion, or elites use it to justify politics - and when this happens it usually is the death of real science.

the only studies to trust by my standards is if real independent (usually small people nobody knows) who have experience with study design and statistics to analyse it pretty hard and can proof method errors or affirm the correctness.
but chance is that few of us have somebody in their surroundings who can do this, usually some statistics or mathematics student or doctor who already did publications.
(but even if they do this, it takes really long time to completely analyse a publication and the research its based on, raw data isnt mostly available - just by reading the conclussion will not work)

 

[Husband of]

The only thing that CFS/ME and long covid have in common are that they both produce messenger RNA.

CFS/ME is linked to DNA viruses that integrate into the genome of infected cells.
Long covid is linked to RNA viruses that aren't normally supposed to be able to integrate.

Both produce messenger RNA that is believed to induce a defensive mitochondrial fragmentation response which causes a massive energy deficit by turning the Kreb's cycle off.

Why couldn't me/cfs be linked to rna viruses in some subsets and dna viruses in others?

 

[heapsreal]

The CFS community has a big problem. National Institutes of Health is the major funding body for medical research in the United States. They only fund $15 million per year (frozen) for research on HHV-6 and $9 million per year for research on CFS. The problem is that researcher Bhupesh Prusty PhD in Germany has found evidence that HHV-6 and HHV-7. Other physician have found that active HHV-6 and/or HHV-7 has been found in many CFS patients. According to prusty there is strong evidence that the causative agents behind CFS and says that a drug to inhibit a specific MicroRNA, miR-aU14, has a good likelihood of curing the disease.

https://www.healthrising.org/blog/2022/12/15/prusty-hhv-6-brains-chronic-fatigue-syndrome/
https://pubmed.ncbi.nlm.nih.gov/35508655/

However, $15 million and $9 million are not adequate levels to research this. NIH funds EBV, CMV and HHV-8 at $300 million each. I proposed to NIH that they do an animal study on HHV-6 to see if they could induce CFS as a co-infection during EBV convalescence. They haven't responded.

This is terrible. CFS costs the USA approximately $35-51 billion per year in economic cost. If Prusty is right then NIH's inaction is costing the USA money and prolonging the suffering of CFS patients.

https://solvecfs.org/wp-content/uploads/2021/02/Jason-Mirin_Prevalence_econ_update.pdf

I just watched a video about the dogs and cats that don't get adopted in shelters and get euthanized, 347,000 per year, and it reminds me of how the government probably feels about CFS patients. Here they have a group of 2 million people that have a disease of, according to them, unknown cause, that are isolated from society and cost them a lot of money, $51 billion dollars per year. In the 1980s through 2000, NIH bent over backwards to deny government disability insurance claims, which set a precedent to deny private long-term disability insurance claims, by running a propaganda program to tell doctors that CFS was a mental illness, which in practicality means that they are trying to make these people homeless, destitute and kill them off so they do not have to support them. I know this personally because I had to fight for four years to get my disability claim approved and even then it was only granted after a neuropsychologist diagnosed me as having a somatic pain disorder that I disagreed with but served the purpose of keeping me alive because it was a mandatory acceptance. At that point, I was down to $7,000 in savings and would have accepted a diagnosis that I was a carrot if it meant getting the disability insurance so I would not die homeless. But technically for disability purposes, I was not approved for having CFS despite the fact that I had not worked a job since contracting it and I still have not worked for 15 years now, which I HATE.

Although the government's ridiculously low funding for CFS research ($1 measly million per year was raised to a paltry frozen $15 million in 2000 which in today's 2023 dollars is only $8.5 million ) and misappropriation of those funds as documented by Hillary Johnson was stopped in the USA after large-scale patient protests about 20 years ago.

This thread cover's Hillary Johnson's book Osler's Web.

https://forums.phoenixrising.me/thr...failure-to-respond-primetime-live-1996.90444/

So NIH is screwing the CFS community by lowering its research funding every year by the inflation rate.

In the UK the persecution of CFS patients continues. They recently released a new version of mental healthy based NICE guidelines that continue to push harmful Graded Exercise Therapy and CBT psychotherapy on CFS patients.

https://www.personneltoday.com/hr/nice-chronic-fatigue-syndrome-guidance-questioned/

I also recall reading how bedridden UK children with CFS were forced by court order into mental hospitals to torture them out of it. The UK has been cited for poor treatment of children in mental hospitals.

https://www.independent.co.uk/news/health/mental-health-abuse-hospital-b2204922.html
https://www.bbc.com/news/uk-48329398

Following this "reduce the useless eaters" argument, the government allows cigarette sales but heavily taxes and discourages vaping which has a net effect of killing off people through cancer which is estimated to shorten a person's life by 10 years. So in my mind, the government's mindset is that CFS patients are a drain on society and the best thing they can do is to get rid of them as quickly as possible. How do you do this? Don't fund research for a cure and make getting disability as difficult as possible which is exactly what we see.

It doesn't matter which party is in power, the policy to underfund and attack CFS disability claims remains intact because that is what the leaders of the G7 want.

Look, I know we CFS patients are a drain on society economically and a day doesn't go by that I don't hate this illness and these viruses with every part of my being for robbing me of the ability to be adequately productive. I pay for this in every way-financially, socially, professionally, and I want to see things get better. People say they feel bad that I have CFS and lupus but nobody really does anything to help except for the Open Medicine Foundation (OMF). We have never been so close to finally getting effective treatments developed. There have been days when I felt guilty for even living and questioned whether the animal cruelty I am responsible for by eating animals is justified by my contributions. Every day I try to do something good for the world to repay this debt. However, overly focusing on eliminating patients to the point that critical research that has the potential to cure them is not being funded is NOT going to get this disease cured and end the problem. Instead, it just pushes it down the road. If viral co-infection by HHV-6 and HHV-7 after EBV infection are the root cause of CFS then the only way to stop it is to vaccinate people for the viruses and, for existing patients, develop effective treatments that neutralize the viruses so they can have their function restored.

We need to change their mindset. The reality is that they are missing a great opportunity to finally find a cure for CFS but their pessimistic mindset is blocking them from taking action.

It needs to change. Is there anything we can do on a practical level to show them that CFS patients are demanding more research into HHV-6 and HHV-7? We have to step up and fight for this or it may never happen.

What do you think? I'd like to hear your thoughts.

Please like this post if you agree.

I'd be happy if we could get valcyte, which is now an old drug, at a similar price to valtrex.

Since the late 1980s and ongoing research since, we have known the nk function is low in cfsme. What's been done about it? Bloody nothing. They could use it as a biomarker as apart of a cfsme diagnosis. This would make research participants truer and easier for pts to get disability having a biomarker that can be tested for.

Also, knowing there's a dysfunction with nk function is a big fat target for a drug company to make a drug to improve nk function and trial it in cfsme pts. By the way ampligen was shown to increase nk function in cfsme pts and I.prove quality of life. But ampligen is another rabbit hole filled with cement.

I think there's tests and treatments out there but they don't give a crap. Personally if a cfser fits the criteria for cfsme, has low nk function, has high viral titres for any or many herpes viruses and was put on valcyte and ampligen, we could see big changes. There's a possibility if one has been sick along time that they may need antibiotic treatment for bacterial co-infections??
Then they need to work out some sort of maintenance phase with ampligen eg after the initial 6 months of treatment, one needs 3 months every year or they produce an oral version??? Or maybe once better, Immunovir is enough to maintain good nk function.

It's all there in plain daylight, again they don't give a crap.

 

[Viala]

We don´t know yet. Whatever paper we read (about any research), we should look for inconsistencies. Also reading the references if they correspond with the now published paper.

If the data they provide are not falsified in the first place, there's just so many ways to bend the truth. Inconsistencies are easier to spot, if data is falsified it will be difficult to discredit the study, if not impossible.

 

[gbells]

I'd be happy if we could get valcyte, which is now an old drug, at a similar price to valtrex.

Since the late 1980s and ongoing research since, we have known the nk function is low in cfsme. What's been done about it? Bloody nothing. They could use it as a biomarker as apart of a cfsme diagnosis. This would make research participants truer and easier for pts to get disability having a biomarker that can be tested for.

Also, knowing there's a dysfunction with nk function is a big fat target for a drug company to make a drug to improve nk function and trial it in cfsme pts. By the way ampligen was shown to increase nk function in cfsme pts and I.prove quality of life. But ampligen is another rabbit hole filled with cement.

I think there's tests and treatments out there but they don't give a crap. Personally if a cfser fits the criteria for cfsme, has low nk function, has high viral titres for any or many herpes viruses and was put on valcyte and ampligen, we could see big changes. There's a possibility if one has been sick along time that they may need antibiotic treatment for bacterial co-infections??
Then they need to work out some sort of maintenance phase with ampligen eg after the initial 6 months of treatment, one needs 3 months every year or they produce an oral version??? Or maybe once better, Immunovir is enough to maintain good nk function.

It's all there in plain daylight, again they don't give a crap.

The existing HHV-6 antiviral drugs aren't suitable and are only approved for short-term use of herpesvirus flare-ups. According to Prusty they don't work because they still allow micro RNA to be generated which triggers mitochondral fragmentation. For the existing drugs, artesunate has the best effect (40% effectiveness for CFS patients). Micro RNA drugs should be much more effective.

 

[gbells]

Why couldn't me/cfs be linked to rna viruses in some subsets and dna viruses in others?

If there is something that allows the RNA virus to DNA ingrate and persist then yes it could happen. For example, cells already infected with chronic viruses like Epstein Barr virus or HHV-6 are called immortalized because they can't perform apoptosis to kill the cell as you would see in a normal immune response so they persist. For this reason, people already infected with these DNA viruses are the people that I would expect to have long covid.

But my point is that the common denominator here is the MRNA.

 

[heapsreal]

The existing HHV-6 antiviral drugs aren't suitable and are only approved for short-term use of herpesvirus flare-ups. According to Prusty they don't work because they still allow micro RNA to be generated which triggers mitochondral fragmentation. For the existing drugs, artesunate has the best effect (40% effectiveness for CFS patients). Micro RNA drugs should be much more effective.

I don't think anything really clears a virus, other than getting the viral load down and allowing the immune system to handle it.
I don't have hhv6, but cmv and found valcyte much better than artesunate. Artesunate does seem to be a good allrounder for viruses, bacteria and protozoa etc. But agree, I'm all for better antivirals.

 

[heapsreal]

If there is something that allows the RNA virus to DNA ingrate and persist then yes it could happen. For example, cells already infected with chronic viruses like Epstein Barr virus or HHV-6 are called immortalized because they can't perform apoptosis to kill the cell as you would see in a normal immune response so they persist. For this reason, people already infected with these DNA viruses are the people that I would expect to have long covid.

But my point is that the common denominator here is the MRNA.

Do long covid pts have low nk function??
Does the low nk function happen first in cfsme or is it a type of immune exhaustion from chronic viral infections??
I still think an antiviral with something that increases nk function is our best chance of clear an infection. Similar to hepatitis where they use interferon and an antiviral.

 

[Husband of]

Do long covid pts have low nk function??
Does the low nk function happen first in cfsme or is it a type of immune exhaustion from chronic viral infections??
I still think an antiviral with something that increases nk function is our best chance of clear an infection. Similar to hepatitis where they use interferon and an antiviral.

I thought there was a MECFS study showing nk function was higher than normal in first three years, lower than normal thereafter. Certainly there has been contradictory results amongst studies that haven't differentiated based on how long someone has had cfs

So, if long COVID were similar you might expect any tests thus far would show increased nk function

 

[SWAlexander]

I don't think anything really clears a virus, other than getting the viral load down and allowing the immune system to handle it.

That is the problem. The immune system is not handling the virus. People can have an infection once and never have another episode or they can experience reactivation of the virus.
Some people with mononucleosis syndromes may have simultaneous positivity of both EBV VCA IgM and CMV IgM, resulting in a diagnostic dilemma.

For too many years Herpes was not taken seriously. Antiviral medications, such as valacyclovir, famciclovir and acyclovir, are effective and could prevent the most permanent damage such as: Vision loss and eye problems, postherpetic neuralgia, muscle weakness, Encephalitis, Myelitis etc.

I ask which one causes inflammation of the meninges. As I found out bacteria is also involved. But who really bothered to test?
“Most cases of meningitis in the United States are caused by a viral infection. But bacteria, parasites and fungi also can cause it. https://www.mayoclinic.org/diseases-conditions/meningitis/symptoms-causes/syc-20350508

Once the virus and bacteria are in the CSF, viral involvement of the meninges can involve the cortex and brain itself, leading to meningoencephalitis and encephalitis. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7150022/

 

[heapsreal]

I thought there was a MECFS study showing nk function was higher than normal in first three years, lower than normal thereafter. Certainly there has been contradictory results amongst studies that haven't differentiated based on how long someone has had cfs

So, if long COVID were similar you might expect any tests thus far would show increased nk function

I can't say I've ever seen a test showing cfsme pts have high nk function at all. The only study I recall about the first 3 years is the chance of complete recovery is best within the first 3 years. After 3 years the chances of complete recovery drop considerably.
I think it was hard to find people in the early stages of cfsme because it took the majority of people many years to get a cfsme diagnosis, even though the criteria says have symptoms for 6 months. It just takes so long to rule things out. A couple of good lab biomarkers to go with a cfsme diagnosis would go along way in making an earlier diagnosis and could possibly help people recover as they start pacing earlier and other suitable treatments that may help???

 

[heapsreal]

That is the problem. The immune system is not handling the virus. People can have an infection once and never have another episode or they can experience reactivation of the virus.
Some people with mononucleosis syndromes may have simultaneous positivity of both EBV VCA IgM and CMV IgM, resulting in a diagnostic dilemma.

For too many years Herpes was not taken seriously. Antiviral medications, such as valacyclovir, famciclovir and acyclovir, are effective and could prevent the most permanent damage such as: Vision loss and eye problems, postherpetic neuralgia, muscle weakness, Encephalitis, Myelitis etc.

I ask which one causes inflammation of the meninges. As I found out bacteria is also involved. But who really bothered to test?
“Most cases of meningitis in the United States are caused by a viral infection. But bacteria, parasites and fungi also can cause it. https://www.mayoclinic.org/diseases-conditions/meningitis/symptoms-causes/syc-20350508

Once the virus and bacteria are in the CSF, viral involvement of the meninges can involve the cortex and brain itself, leading to meningoencephalitis and encephalitis. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7150022/

Totally agree. They have known since the late 1980s that cfsme pts have low nk function. I remember first watching on utube old news clip of the late 1980s where they were interviewing Dr Dan Peterson on cfs and the Lake Tahoe outbreak and they were mentioning low nk function back then. Plus they were saying it will only be a couple of years and they will have a cure with the right research. I'm watching this online in about 2010, after being a pt involved in cfs nk function study, and hear this news report from 1988, 22yrs later. I was fuming.

Now I just think, imagine how those original cfsers from Lake Tahoe feel and wonder how they are going. With long covid you hear them talking about low dose Naltrexone to improve immune function. I just think it's grasping at straws as they tried it during the AIDS epidemic before antiretroviral drugs were available and then with cfs, actually a few times with cfs and its only had minimal success.

Sorry to sound negative but it's the same desperation treatments because of a lack of serious funding and research into proper diagnostics and treatments.

I also agree they need to treat herpes viruses more seriously. There is research showing mono from ebv, cmv and probably hhv6 that 10% have prolonged fatigue if not outright cfsme. I'd like to see them treat mono like they do with shingles ie use antivirals to prevent post hetpetic neuralgia and other complications of varicella virus. So if someone sees their Dr with mono type symptoms and tests positive, put them on 2 weeks of antivirals to hopefully reduce that 10% of people who have prolonged fatigue and disability from mono, ebv/cmv??

I responded quite well to the antiviral famvir but didn't start it until 7 years after my cfs onset from ebv/cmv mono. I often wonder if it was mainstream treatment to give someone with mono antivirals if I'd be in a completely different place, health wise???

 

[SWAlexander]

herpes viruses

You talk about something I´m trailing since 2005. I have collected many papers and tried to write a META- analysis. Though, I found quite a lot of contradictory reviews.
My main question still is if anybody who had shingles was treated with antiviral medications, such as valacyclovir, famciclovir and acyclovir? The antiviral medication list is long.

In 2005 I had 2 times shingles with blisters. In 2006 I was diagnosed with "Varicella Zoster Virus Reactivation Without Rash" and encephalitis.
This was the time I learned, whether the pain is constant or intermittent, it can go on for a long time. You can have PHN for months, years, or the rest of your life. There is no way to know how long it will last.
Once I stated here on PR that I believe CFS could be closely related to CSF. I think I found reliable evidence. So far I found over 90% of symptoms match CFS and quite some fit ME as well.

Here is one (of many) example if you care to read:

CSF in acute and chronic infectious diseases​

The viral involvement of the meninges can involve the cortex and brain itself, leading to meningoencephalitis and encephalitis.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7150022/​

 

[heapsreal]

You talk about something I´m trailing since 2005. I have collected many papers and tried to write a META- analysis. Though, I found quite a lot of contradictory reviews.
My main question still is if anybody who had shingles was treated with antiviral medications, such as valacyclovir, famciclovir and acyclovir? The antiviral medication list is long.

In 2005 I had 2 times shingles with blisters. In 2006 I was diagnosed with "Varicella Zoster Virus Reactivation Without Rash" and encephalitis.
This was the time I learned, whether the pain is constant or intermittent, it can go on for a long time. You can have PHN for months, years, or the rest of your life. There is no way to know how long it will last.
Once I stated here on PR that I believe CFS could be closely related to CSF. I think I found reliable evidence. So far I found over 90% of symptoms match CFS and quite some fit ME as well.

Here is one (of many) example if you care to read:

CSF in acute and chronic infectious diseases​

The viral involvement of the meninges can involve the cortex and brain itself, leading to meningoencephalitis and encephalitis.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7150022/​

My cfs onset started with cmv mono, chicken pox then ebv mono at 31yo over a 6 month period.
It took 7 years to get antivirals which I improved. After 6 years I decided to stop to see how I'd go. Before stopping famvir I actually got tested to get my immunity for shingles/varicella and the test came back saying I had good immunity. Within a week of stopping famvir I felt crap and shortly after a shingles rash down the left side of my head. That was 2015 and I still get shingles reactivation to this day even though I stay on famvir, which I think reduces the severity. I personally think my low nk function is what allows this to keep occurring. My dr at the time said that the test saying I had good immunity to varicella was probably picking up antibodies to an active infection. Sometimes I get the pain on that left side with no rash other times a rash will break out. I've lost count how many out breaks with a rash I've had since 2015.
I don't know if it's related or not but there is a chronic reoccurring form of varicella meningitis called mollarettes and it sound very much like cfsme but caused by varicella specifically.

I've just had botox shots all around my head about 4 days ago to see if it will help with the chronic headaches. Neurologist said it can take 2 weeks to start working and if it helps, you need to keep the shots up every 3 months. Exactly the same thing they do for migraines. Time will tell.

 

[heapsreal]

CSF in acute and chronic infectious diseases​

The viral involvement of the meninges can involve the cortex and brain itself, leading to meningoencephalitis and encephalitis.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7150022/​

In your link it mentions mollarettes meningitis from hvs1 and 2 but I have read elsewhere they also include varicella virus meningitis as mollarettes.

 

[SWAlexander]

chronic headaches

Migraines are my constant companion since I was 11 years old. I don't know if I had chicken pox as a child. What I know for sure is the burning of the neck and sometimes my whole body feels like on fire. Today I ask if migraines are a part of the undetected varicella meningitis or myositis makes the immune system attack your muscles. Depending on which type of myositis you have, you’ll have a hard time moving or using your affected muscles. I´m still searching for a connection between the chyle, (lymphatic system fluid) and a malfunction to inflammation caused by viruses or bacteria.

And yes, Mollaret's meningitis, could fit in the picture because of recurrent episodes of aseptic lymphocytic meningitis. One of the visible symptoms is petechial rash and one of the recurring symptoms I experience.

From a PDF (Laboratorial Diagnosis of Lymphocytic Meningitis): " Meningitis is the most common infectious CNS syndrome, defined as an inflammation of the meninges. The clinical symptoms are fever, malaise, vomiting, and in some cases, petechial rashes."

"Meningitis is an infection and inflammation of the fluid and membranes surrounding the brain and spinal cord. These membranes are called meninges." https://www.mayoclinic.org/diseases-conditions/meningitis/symptoms-causes/syc-20350508
and

Mollaret’s Syndrome: A Case Report https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10239340/​

 

[heapsreal]

Migraine was and still is my constant companion. Today I ask if migraines are a part of the undetected varicella meningitis.

I'm not sure if my headaches are really migraines. My neuro hasn't definitively said migraines yet but classed it or called it more neuralgia. It's just a constant pressure of varying degrees. On occasions they go migraine like and will vomit for several days straight. I really don't know what to call them, just severe headaches and vomiting. My recent experience getting my headaches further investigated, it seems migraine is really a term for severe headache that they don't know what's really causing it. That's after investigating and ruling things out.

I think most of us that fit into this cfsme group we just don't fit neatly into one box unfortunately.

What treatments do you do specifically for varicella yourself and for symptoms like headaches etc? Where did you get the shingles rash and did you get the 2nd infection in the same spot??

 

[Andryr]

Here they have a group of 2 million people that have a disease of, according to them, unknown cause

But what about the NIH ME/CFS intramural study? Avi Nath said they found something. Also said the next step will be determining biomarkers. There is a chance it has to do with some viral particles.