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

[gbells]

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.

 

[Viala]

We do not drain society, they drain us from our health, money and inheritance that we could give to our children and instead of giving it to our children, we transfer our goods to pharmaceutical business. Feeling guilty is a very convenient thinking that they plant in our heads, because of course it benefits them. Please do not follow their toxic rabbit hole.

We as a society pay them huge taxes, we pay half of what we earn every year and THEY OWE US keeping us safe and healthy in exchange. Instead, they trick people to think that we are a burden to the society, but it is them that didn't provide what they promised us and because they want to have their hands clean, they blame us. Then they plant guilt in our heads even for eating meat, which is ridiculous. We always ate meat. In our evolution as homo sapiens we never were vegetarians nor vegans, we evolved to being human because we started to eat meat, and these people with their evil agenda want to make everyone feel bad for getting the nutrition that we physically need. We need vitamin B12, iron and animal based vitamin A to stay healthy. They show us what they think of us with their actions and I think there is the answer to when they will find a cure for ME/CFS.

I like this quote: 'The dignity of human beings must not be measured in usefulness.'. But they're slowly and gradually normalizing this idea. We all know who invented this way of thinking, but officials are trying to sell it to us as something... humane.

 

[gbells]

They show us what they think of us with their actions and I think there is the answer to when they will find a cure for ME/CFS.

Very true

 

[SWAlexander]

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 agree with you.

BTW the German government has slashed funding for Covid and ME/CFS from 100 million to 20 Million for research and 20 Million special for care facilities.

Maybe we have arrived at the time and point of "Soylent Green".

 

[gbells]

I agree with you.
Maybe we have arrived at the time and point of "Soylent Green".

I just don't like the "every man for himself" attitude where all we think about is our individual survival with no regard for the effect of our actions on everyone else. I think we should care about the welfare of future generations, the planet etc. If extending your life means that 1,000 poor kids don't have the resources to get a good education because of a lack of funding is this a fair trade? Given how bleak many bedridden CFS patient's lives are I would have to say for them at least the answer is no. But the USA isn't Canada and we don't have access to medical assistance in dying. Resources aren't unlimited and there is always a give and take. On the other hand, when the government spends billions of dollars on weapons programs and works against finding cures it doesn't exactly engender confidence in their priorities.

As for me, I like the fact that CFS costs them so much money as it gives them a big incentive to cure it. I see the existence of CFS patients as a kind of silent protest to demand action. But silent protests don't get results.

We need more activism, like the millions missing campaign, to shame them into corrective action.

At this point we have a solid lead on what is causing CFS and there are huge economic savings that will result from curing it. We need NIH to change its stance and fund good research proposals.

 

[gbells]

BTW the German government has slashed funding for Covid and ME/CFS from 100 million to 20 Million for research and 20 Million special for care facilities.

Same disturbing trend and very predictable. And this is the country that the researcher Bhupesh Prusty hails from.

If I were NIH I would create a plan to expand research and attack the disease as follows.

1. Run a study on animals to test the hypothesis that CFS is the result of coinfection by HHV-6/HHV-7 following EBV infection.

a. If successful, then fund the development and testing of vaccines for HHV-6 and HHV-7 and add them to the vaccination schedule.

b. Inform doctors to warn patients to avoid any exposures with individuals showing signs of active viral illness during the convalescence phase of EBV, up to 6 months post-infection, so they do not acquire viral co-infections that would induce CFS.​

2. Fund the development of an inhibitor drug for micro RNA miR-aU14 and test it on CFS patients for safety and efficacy. This would create a maintenance drug therapy for current CFS patients that would induce remission.

3. Fund the development of a CAR-T gene editing therapy targeting HHV6 and HHV7 to inactivate it in current CFS patients (this has the potential of a permanent cure for CFS).

 

[Viala]

Maybe we have arrived at the time and point of "Soylent Green".

Which leads to reality of 'Cloud Atlas' and these poor waitresses.

 

[Viala]

"every man for himself" attitude where all we think about is our individual survival with no regard for the effect of our actions on everyone else.

That's exactly how they think about themselves and they need our compliance so they could live of our backs. They weaponized guilt and use people's good intentions, but it never works out to our benefit. Their goal is not to save the planet or anyone, only themselves, even though saving the planet is a good thing, but that's not what they want.

On the other hand, when the government spends billions of dollars on weapons programs and works against finding cures it doesn't exactly engender confidence in their priorities.

This. There are always money for yet another war, but no money for their own sick citizens.

 

[gbells]

Which leads to reality of 'Cloud Atlas' and these poor waitresses.

The selected text appears to be a reference to the 2012 epic science fiction film ‘Cloud Atlas’, written and directed by the Wachowskis and Tom Tykwer. The film is based on the 2004 novel by David Mitchell and has multiple plots occurring during six eras in time, with the cast members performing multiple roles1. One of the characters in the film is Sonmi~451, a waitress of the future who foments revolution. Lana Wachowski, one of the co-creators of the film, said that this character mirrored her own experience2.

 

[SWAlexander]

There are always money for yet another war, but no money for their own sick citizens.

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​

 

[gbells]

Research became quite unreliable. I have found many papers with contradictory or misleading references.

That's the problem when the federal agencies have an agenda. They can direct funding only towards a predetermined agenda and that taints the science, medical guidelines and blocks advancement. Then this trickles down to the attitudes and perceptions of treating providers and the general public. In the case of early NIH CFS funding, the agenda was to build a case for a psychogenic cause. That meant any research into physical causes was denied. 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.

That was really evil.

 

[gbells]

In 2015 the CDC was criticized for taking money from insurance companies through their CDC Foundation which creates a conflict of interest to taint guidelines.

Lenzer discusses the conflict of interest generated by an infusion of millions of dollars from private corporations into the CDC. Although she only presents a few cases in which the CDC has shifted policy in order to aid corporate interests, given the enormous amount of money it has received, there are obviously many more.

The demise of the CDC as a public institution began in the 1980s during the Reagan-era period of privatization. In 1995 the CDC Foundation, which was created by Congress, began to accept "gifts" on behalf of the CDC. This funding arm has not only led to skewed treatment recommendations - the most recent of which is the narrow window of antibiotic treatment allowed to Lyme disease patients - but has opened the door to strong-arm tactics, such as the NRA's withdrawal of funds after the CDC began an investigation of gun violence.

The CDC will not bite the hand that feeds it. In the case of ME/CFS the hand is most likely insurance companies, which (as in the case of Lyme disease) don't want to pay for expensive long-term treatments. As long as the CDC promotes criteria for ME/CFS that are vague enough to fit into the generally accepted definition of depression, doctors will prescribe therapy and exercise, patients will be misdiagnosed, and it goes without saying that Ampligen will never be approved.

Despite the agency’s disclaimer, the CDC does receive millions of dollars in industry gifts and funding, both directly and indirectly, and several recent CDC actions and recommendations have raised questions about the science it cites, the clinical guidelines it promotes, and the money it is taking.

Marcia Angell, former editor in chief of the New England Journal of Medicine, told The BMJ, “The CDC has enormous credibility among physicians, in no small part because the agency is generally thought to be free of industry bias. Financial dealings with biopharmaceutical companies threaten that reputation.”2

Industry funding of the CDC has taken many doctors, even some who worked for CDC, by surprise. Philip Lederer, an infectious diseases fellow at Massachusetts General Hospital and Brigham and Women’s Hospital in Boston, Massachusetts, and a former CDC epidemic intelligence service officer, told The BMJ he was “saddened” to learn of industry funding.

Calman said, “Industry claims their scientific methodology ensures their studies are unbiased—just as the CDC claims money doesn’t affect their recommendations. Yet multiple studies clearly—and repeatedly—show that who sponsors a study, or issues a guideline, makes a difference.”

Hoffman said, “Most of us were shocked to learn the CDC takes funding from industry. Of course it is outrageous that industry apparently is allowed to punish the CDC if the agency conducts research that has the potential to cut into profits. But it was our government that made this very bad arrangement, so the way to fix it is not to ask the CDC to ‘pretty please be more ethical, and avoid conflicts of interest’; rather, as a society, we have to get the government to reject this devil’s bargain, by changing the rules so this can no longer happen.”

John Mandrola, a cardiologist in Louisville, Kentucky, reacted to the news of industry funding, saying that the CDC “must have the highest of moral ground. For if we are to believe them about public health matters, there can be no conflicts of interest. The public good, pure evidence, that is all.”

Neil Calman, president and chief executive of the Institute for Family Health in New York, a large community health center network in 31 locations with over half a million patient visits a year, says the institute has relied on CDC guidance largely because of its prestige as an independent agency, free of industry relationships. Calman told The BMJ, “Industry funding undermines trust and introduces a bias in the presentation of results and treatment recommendations that is deplorable for a government agency. If the allegations of industry funding and influence are true, we will have to look very carefully at recommendations we are following now and those made in the future by the CDC.”

(CONFLICT OF INTEREST: CDC ACCEPTS MILLIONS FROM CORPORATIONS. 5/23/2015)

But the CDC and other government agencies, are immune from all oversight, except congressional. So that means Dr. Hoffman was right, unless the public demands change it will not happen.

The Court, comparing the War Claims Commission to the FTC, used its ruling in Humphrey’s Executor to again rule that the president must follow Congressionally stated procedures for the firing commissioners. Taken together, Humphrey’s Executor and Wiener indicate clear limitations on the president’s power to fire people at will, or for policy disagreements. Purely executive employees may still be fired at the discretion of the president, but this is not true of all executive agencies and employees.

Thus, despite Ambassador Haley’s assertion, the president cannot fire whomever he chooses, and certainly not for whatever reason he wants. The requirement of the advice and consent of the Senate for hiring many federal executive positions—including post masters, FTC commissioners, and commissioners for other federal executive agencies—indicates the president cannot hire whomever he wants either. It is probably worth mentioning the obvious, but Robert Bork or Merrick Garland would also be able to explain that the president cannot hire whomever he likes for federal positions in other branches of government.

https://www.ucpublicaffairs.com/hom...ire-or-fire-who-he-wants-by-daniel-tagliarina

 

[gbells]

This. There are always money for yet another war, but no money for their own sick citizens.

I don't agree here. There are only 1.2 million AIDs patients but they had a budget of $2.6 billion FY 2019 versus 2 million CFS patients with a budget of $15 million.

It's a question of whether they think the money would be wasted or contribute to real advancements in curing CFS. If you don't know the cause then it's hard to justify the outlay. But now that we have definite leads they should be funding it at an adequate level to make progress.

Given their past misconduct towards CFS patients, NIH and NAIADs owe it to them to increase the funding and see if they can cure it. NIH did rename CFS to SEID to move forward and get the disease legitimized. They also deserve a chance to set things right. They just have to catch up with the newer research and do it.

 

[hapl808]

It's a question of whether they think the money would be wasted or contribute to real advancements in curing CFS. If you don't know the cause then it's hard to justify the outlay. But now that we have definite leads they should be funding it at an adequate level to make progress.

I think it's more a question of public branding and opinion. AIDS had a huge push in the 80's and 90's for activism, celebrity support, etc. It went from a denied or dismissed illness to the most popular topic in healthcare for a generation - mostly through the very hard work of activists. Unfortunately, those most affected by ME/CFS are least able to do the research. If we literally lose our voices, ability to stand up, etc - then we depend on others to do the work.

From May 1988, activist Larry Kramer writing about Fauci's response to AIDS:

"You are responsible for supervising all government-funded AIDS treatment research programs. In the name of right, you make decisions that cost the lives of others. I call that murder."
…
"It doesn’t take a genius to set up a nationwide network of testing sites, commence a small number of moderately sized treatment efficacy tests on a population desperate to participate in them, import any and all interesting drugs (now numbering approximately 110) from around the world for inclusion in these tests at these sites, and swiftly get into circulation anything that remotely passes muster. Yet, after three years, you have established only a system of waste, chaos, and uselessness."

His criticism of Fauci wasting $374m is ironic when NIH got $1.15b for Long Covid research and possibly did *even less* with that. Where are all the repurposed drugs, leveraging AI for EHR, etc. Nothing.

https://www.villagevoice.com/2020/05/28/an-open-letter-to-dr-anthony-fauci/

 

[hapl808]

LDA, LDN, Ibudilast, Tranilast, Ampligen, methylene blue, IVIG, and on and on, lactoferrin, mestinon, various antivirals, probiotics, antifungals, antiparasitics, and on and on. Instead of robust trial data, we're here swapping stories and trying dangerous medications with minimal safety net most of the time.

 

[gbells]

Vilifying the CDC, NIH and NAIADs for their past actions is not a good strategy (notice how they ignored the 2015 critique above except to make donations transparent through a Donor Report). It would just provoke a defensive response and the media would likely censor the message. Stay focused on the fact that we have good leads and emphasize that it is time for them to aggressively ramp up research to make this a treatable disease and end the disability. They did it for long covid funding, they can do it for CFS HHV-6 too.
With enough attention, they will see reason and do it.

 

[Rufous McKinney]

t would just provoke a defensive response and the media would likely censor the message. Stay focused on the fact that we have good leads

what you say is likely true, given what we know of human nature.

 

[RL_sparky]

I could not read all the posts in this thread,
I just wanted to point out that the NIH is going to have an ME/CFS
conference in December.

• NIH ME/CFS Young and Early Investigators Conference
  December 11, 2023
  Bethesda, MD (in-person and virtual)
  
• Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID
  December 12-13, 2023
  Bethesda, MD (in-person and virtual)
  
  https://www.nih.gov/mecfs/events
  
  Maybe things are slowly changing at the NIH.

 

[gbells]

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.

 

[Viala]

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​

Definitely, even if data is correct, there are myriads of ways to bend the truth with statistics itself. A lot of people read abstracts only so there is no way for them to notice that something is wrong. Something similar happened with Purdue Pharma. I've also seen conclusions in abstracts which were in direct contradiction to what was written in the study and some drug studies don't even follow a golden standard. It doesn't work to our benefit if they produce fake results or no results to protect someone's interests. The fact that they didn't do anything real with covid research and that long covid resembles ME/CFS a lot, means that something else is going on.