Diagnostics, Treatment & Recovery: New XMRV/Chronic Fatigue Syndrome Findings

I’m desperately waiting for this. It’s so depressing pushing myself through every action and thought. It’s hard not to think about what I could be doing if I could.

Thanks for the great posting

Thank you for this update. News we have all been waiting for… for years….

Yes! Thank you for this great news Hope it’s not too much longer, I would love to have normal immune function.

@Dana – I hear ya!

I’ve been struggling through every day for 25 years now. It really sucks. I threw away a Bachelor’s degree to this miserable disease and yes, I’m bitter. My anger is with the CDC and the people there responsible for trivializing this disease and condemning us PWCs to decades of suffering and loss.

I’ll never be able to recover the time lost with my children who basically grew up without a father. When the truth comes out, maybe they’ll finally understand that dad was sick and that was why he was always so short tempered.

Nor will I be able to recover the income I lost because I haven’t been able to handle the stress of the job I went to college for. Nothing will erase the fact that I was let go from a job because I just couldn’t keep all the balls in the air.

I’m 55 now and even if the magic CFIDS bullet comes through, I’ll probably still have Idiopathic Peripheral Neuropathy which started at the beginning of this year and has left me unable to walk or stand for any period of time. My divorce coupled with the failing economy has left me upside down in my mortgage and virtually wiped out what little I did have in savings. Now I’m hoping that I can afford a trailer in Florida to live out my life. If I could go out on disability, I’d do it tomorrow.

Yeah Dana, I hear you all to well.

Good luck.

I have lost my health, my home, my savings, and all my friends because of this illness. Every day, I feel myself getting weaker and weaker. I hope this is the awnser we have been looking for. Thank you.

@JohnBit, you CAN get disability for ME/CFS. SSA recognized it as a real disease around 1997, if I recall correctly. Read up on what it takes to convince them before you start the process.

It’s a shame that so many good people were just wasted for decades while research effort was put elsewhere.

I hate this damn thing.

After all the work to prepare for and start a promising career, and to end up scratching for basics, being treated with disrespect, abandoned by loved ones, and just pushed off the planet virtually

All that money going out to unwed mothers, alcholics, gamblers,

and then there’s us

non drinkers, non smokers, clean living, conservative, no bad records

and not a dime

not even for disability

while others get 2 or 3 rounds of help for bad behavior, bad choices, plus job training, and starter jobs

and we get pushed aside

for decades

and now the rage is to go abroad and help some less fortunate country, or disaster area

what about US? Right here at home? We’d like to work. We’d like to be a part of life

But oh no –

We’re excluded.

Because they called it a fatigue syndrome, instead of a brain syndrome, or something that would suggest the loss in ability to think, speak, write, remember

I hate this

It’s like being the walking dead
But we never die.

Adrienne, when you say that ” That would likely spur interest from drug companies, which could quickly lead to more clinical trials of HIV drugs for XMRV. (At least 3 already have been conducted, with some promising results.)”, do you mean that you know of three clinical trials that were not yet published and show some promising results (in vivo), or do you took about the studies that found three drugs (Raltegravir, AZT and Tenofovir) to be effective against XMRV in vitro (in a test tube)?

You can’t count on disability. I have had CFS since the summer of 1970, I am nearly 70 years of age. A disability attorney litigated for 4 years, to get me on disability. The judge lied on her report to the board, to make sure I didn’t get disability. Ten years ago, I didn’t look sick. So, the judge recommenced that I go back to work. Now, my wife & I are both on social security. She has Fibro & Polymyalgia, and did get disability for a few years, until age 65.

COMMENT

Here is my short comment on the article here below, where you can find a translation from Norwegian into English with the help of Google. Most important thing in the article is that XMRV has been found in 20 percent of Norwegian CFS/ME sufferers, most probably indicating that XMRV can be found more easily in some patients than in others. The reason why they have found XMRV in 20%, and not in 80% might very well be that XMRV is not always overly present, especially when the CFS/ME patient is feeling well enough for a while to go to the doctor´s office. CFS/ME is a chronic on-and-off disease : therefore I would like to suggest that henceforth blood should be drawn from CFS/ME patients when they feel miserably sick, which is often enough the case, but understandably not when they go to the doctor´s office. A patient with CFS/ME will not that easily be prepared to go to the doctor´s office when he or she is crawling around in pain and agony. I think this article is big news under the sun though ! Because now not only the WPI people have found XMRV in CFS/ME patients, but also Norwegian researchers have found it, though quantitatively not as much as one might have hoped for. I am sure when they put themselves in contact with the people from the WPI, the day will come they find XMRV in 100% of CFS/ME patients.

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You can find the Norwegian URL under my “name” here above, and here is the translation with the help of Google :

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ARTICLE

The government should do more for ME patients
Laila Dåvøy and XMRV test (AP / Media Did)

Laila Dåvøy believe the state should pay the bill for ME patients to let them test for XMRV virus.
Reuters / Media Did

Laila Dåvøy (KrF) seems findings of XMRV virus among Norwegian ME patients is exciting. Now she wants the state to go in with financial support so more can be tested.

*
Helge Carlsen helge.carlsen @ nrk.no
*
Kristian Aanensen kristian.aanensen @ nrk.no

Posted 8/22/2010 6:40 p.m..

Chronic fatigue syndrome (ME)

* Chronic fatigue syndrome is the term for a disease that mainly consists of an abnormal sense of fatigue that lasts more than six months.
* People who suffer from chronic fatigue syndrome experience a complete power failure, as if the batteries are totally flat.
* The main symptom is fatigue that can not be resting away.
* Other symptoms include:
* Disturbed memory or concentration
* Sore throat
* Tender lymph nodes in the neck or armpits
* Chronic muscle pain
* Chronic pain from multiple parts
* Headache that has not been present earlier
* Dizziness
* Unstable blood pressure
* Increased sweating tendency
* Nausea
* Intestinal Problems
* Sleep and rest does not improve symptoms
* Malaise after exercise

Dåvøy who sits in the health and care committee of the Parliament believes virus findings are interesting and calls for the Norwegian health authorities are now going on with money in research.

NRK wrote today about Anette Gilje who have lived with the disease chronic fatigue syndrome since she was 26 years old.

* READ ALSO: Virus discovery may solve riddle of ME

Gilje was bedridden and dependent on a wheelchair for 14 years before she found a variety of infections and inflammation of the intestine. With the help of antibiotics and other drugs, she managed to get noticeably better by the disease.
Thurs virus discovery in Norway

Gilje, together with about 30 other Norwegian ME patients given the test for the so-called XMRV virus under the auspices of Lillestrøm Health Clinic.

The HIV-like virus triggered by other infections and inflammations and break gradually down the immune system. XMRV is found in 95 percent of a group of ME patients who were tested in the United States.

* READ ALSO: – Breakthrough in ME research
* READ ALSO: discouraged to donate blood

The results of the first 10 samples of Norwegian patients shows that 20 percent of the ME sufferers had the virus in the body.

- The state should finance the samples

- I am very happy for the work Lillestrøm Health Clinic has done for the Norwegian ME patients. It’s good that we have doctors in Norway who take this seriously, “said Laila Dåvøy to NRK.

She thinks of Social and Health Directorate has been slow in wanting to accept that there may be a hinge between the infections and ME.

- We should have done a lot more in Norway and also look at what is happening in foreign research. We do not find it all here at home, “said Dåvøy.

Anette Gilje and Mette John Gaard (Photo: Helge Carlsen / NRK)

Anette Gilje (left) has lived with ME since she was 26 years old. Medical Mette John Gaard has organized virus tests of 30 Norwegian patients.
Photo: Helge Carlsen / NRK

Today, the ME patients who wanted to test for the virus to cover the costs themselves, but Dåvøy want when Parliament starts up again suggest that the public go in and take the bill.

- Norway should also afford to contribute to research page and create a competence that is far ahead, “said Dåvøy.

- Cause or consequence?
Vegard Bruun Wyller (Photo: Liam Jordan / Alrik Velsvik / NRK)

Pediatrician Vegard Bruun Wyller.
Photo: Liam Jordan / Alrik Velsvik / NRK

And it’s not on the will of the research, according to physician Dr. med. Vegard Bruun Wyller of Women and Children’s Clinic, Rikshospitalet University Hospital Oslo.

He has led the study group that was behind the Norwegian Knowledge Centre for Health-report on chronic fatigue syndrome. He also leads the ME-research project aimed at children.

- It’s all about funding, and it is the government’s role to find funding, “said Wyller to NRK.

He describes the Norwegian found by XMRV is interesting:

- Anything that can increase our knowledge of ME is important. But it is very important to establish research using control groups that can prove whether this virus is more common in ME patients than in healthy, says Wyller.

Another question is whether XMRV virus is a cause or a consequence of the ME illness:

- Thus, it is difficult to draw the firm conclusions, but it is important to test several of a larger research project.

“I personally am skeptical that the solution to the ME state is on a single virus. In general, it is unlikely that ME has a single cause, but the discovery of XMRV may be part of a larger puzzle that can be help to solve the riddle of ME, said Wyller.

COMMENT

A second article is shedding more light on the Norwegian story. It turns out that only 10 Norwegians with CFS/ME have been tested, and that Norwegian researchers have sent blood samples of these patients to the WPI in the USA, and only two (2) Norwegian CFS/ME patients out of the first ten (10) CFS/ME patients tested have turned out to be XMRV-positive. The other eight (8) CFS/ME patients, however, may very well be false-negatives, because it seems to be known from experience that only those with the worst symptoms will come out as XMRV-positive from the very first time, i.e. from the very first XMRV blood test.

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ARTICLE – TRANSLATION – EXCERPTS

Two Norwegian patients have been detected a new virus, which may help to explain why they suffer from the disease chronic fatigue syndrome (ME). [...] Medical Mette John Gaard has also sent tests of 10 Norwegian patients to WPI to reveal whether virus is also found in Norway. This week the results were clear, and American scientists have discovered XMRV virus in two of the patients. [...] Nevertheless, the virus can be found in her body, since several of the individuals in the U.S. have been false-negative. Moreover, experience shows that there are those who have the most symptoms that turn higher on tests. It is the same for the two that made positive impact in Norway, according to John Manor.

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I’m 27 years old and I’ve had CFS for 8 years. I’ve lost a lot in my life, like many of you have. I was on my way to be the first to graduate from a university in my family until this terrible disease made that nearly impossible. But one thing I take pride in, is that all of us with CFS are very resilient people. We deal with people, co workers and family doubting us, yet we still keep going. Hang in there and remember that many people are struggling with this. Your not alone. And God willing, a cure will come soon. Hopefully this is the start. If I get my health and energy back, I will devote my life to help people with this nasty disease.

Th’re going to change the name from XMRV to HGRV for Human Gamma Retro Virus. I guess there not blaming it on mice anymore, they say its the first of it’s kind. And they keep adding more neuro immune diseases that may come down to infection of “HGRV”. I was hoping it would be easier to say. How this will translate over to our local Drs, and them prescribing an antiviral, that’s safe, we don’t know. Seems like a few yrs off yet. Prohealth.com is one that has more info.

The FDA/NIH XMRV CFS/ME Study Results To Be Released Today

Heidi says: “Th’re going to change the name from XMRV to HGRV for Human Gamma Retro Virus. [...] “HGRV”. I was hoping it would be easier to say.”

Shakespeare Revisited : “Sometimes Hope is Wasted Energy ! And therefore I say and pray : Should ‘HGRV and HGRAD’ perhaps be pronounced as ‘High-Groove and Helengrad’ ? I don´t think so ! But you never know. But you can always have a go. As in Dough Ray ME – Do/Re/Mi – ME Ray Dough – Mi/Re/Do ! But now sing Hallelujah, because XMRV is here to stay, and it will never go away, … unless a cure will be found. That´s the idea : bound to be sound. XMRV and CFS/ME : that´s the idea. So do not drop the idea. For else, I fear, everything we´ve got … will fall into beer. And we cannot have thát, My Dear.”

COMMENT

The new study by FDA/NIH seems to have found a positive link between CFS/ME and three distinct types of MuLV-like Retroviruses, which I would like to call for the time being :

Human MuLV-like Retrovirus-1 (HMRV-1)
Human MuLV-like Retrovirus-2 (HMRV-2)
Human MuLV-like Retrovirus-3 (HMRV-3)

in

86.5% of CFS/ME patients
6.8% of healthy controls

CFS/ME may exist in three (3) subgroups, according to Dr. Kenny De Meirleir.

CFS/ME researcher Dr. Kenny De Meirleir looked at the impairments of the 2-5A synthetase/RNase L pathway in CFS/ME, and he found that there were three subgroups of disease severity

Now the new study by FDA/NIH seems to have found a positive link between CFS/ME and three (3) distinct types of MuLV-like Retroviruses, the information here below may become very relevant indeed.

Literature :

Kenny De Meirleir looked at the pathways and found three subgroups:

Group 1: (15 to 20 percent)

· High levels of LMW RNase L and elastase, low levels of protein kinase (PKR) and uric acid, and low to normal levels of nitric oxide. Elevated levels of lymphocytes and proteins in the spinal fluid, increased pressure upon opening the lumbar puncture

· Chronic low-grade viral infection and inflammatory reaction in the brain. Many microorganisms are associated with this profile. Heavy metals, pesticides, and other triggers may also be involved. ~ 20 percent have low-grade Herpes Virus 6A (HHV6A)encephalitis. [cf Chia]
· Neurocognitive problems – confusion, impaired concentration and memory. Fatigue originates in the brain. Pain is not prominent. Some similarities to (MS).

Group 2: (10 to 15 percent)

· Very high levels of LMW RNase L and elastase, high protein kinase activity, severely low natural killer cell activity, and very low serum uric acid levels.

· Severely ill – bacterial infections originating from animals such as pets, rodents, ticks, etc.

· Severe bowel problems. 70 % of immune cells are in the digestive tract. Leaky gut syndrome, increase in gut permeability

- foreign proteins enter the blood and tissues and inflammation results. Tests for 12 pathogenic gut bacteria.

Group 3: (60 to 70 percent)

· Majority of ME/CFS patients in this group. Profile similar to Group 2, but not as severe. Generalized pain originating from dysfunction in the pain processing areas of the brain and CNS is a prominent feature. GI infections with bacteria in the blood.

http://www.treatingxmrv.blogspot.com/

Another voice.

Al

Omer,

I was referring to the 3 published ones you mentioned. I haven’t seen that they’ve moved into human trials, but I’m sure if they haven’t they will soon.

~Adrienne