Toni Bernhard on ME/CFS

If Chronic Fatigue Syndrome is, indeed, several discrete illnesses, until they are isolated from each other and studied individually, little progress will be made in finding effective treatments or cures.
…

Because those of us with a CFS diagnosis are lumped into one group, when we read about CFS-diagnosed person being cured by a treatment, we rush out and spend hundreds, sometimes thousands of dollars on it, only to be terribly let down and possibly further harmed. Since writing How to Be Sick, I’ve lost count of the number of cures that well-intentioned people have suggested to me. But there’s no reason to believe that these cures would be effective for my particular constellation of symptoms.

If Chronic Fatigue Syndrome is several discrete illnesses, it makes sense that some people will be helped by a particular treatment, while others will not. It’s finally dawned on me that it doesn’t make sense to spend money on a treatment just because it helped or cured another person, when the two of us are unlikely to even have the same illness.

Longitudinal investigation of natural killer cells and cytokines in chronic fatigue syndrome/myalgic encephalomyelitis

Longitudinal investigation of natural killer cells and cytokines in chronic fatigue syndrome/myalgic encephalomyelitis
Ekua W Brenu, Mieke L van Driel, Donald R Staines, Kevin J Ashton, Sharni L Hardcastle, James Keane, Lotti Tajouri, Daniel Peterson, Sandra B Ramos and Sonya M Marshall-Gradisnik

Journal of Translational Medicine 2012, 10:88 doi:10.1186/1479-5876-10-88
Published: 9 May 2012

Abstract

Background
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is an etiologically unexplained disorder characterised by irregularities in various aspects of the immunological function.

Presently, it is unknown whether these immunological changes remain consistent over time.

This study investigates Natural Killer (NK) cell cytotoxic activity, NK cell subsets (CD56brightCD16- and CD56dimCD16+) and cytokines, over the course of a12 month period in patients with CFS/ME.


Methods
The participants in the study comprised 65 (47.2+/-11.5 years) CFS/ME participants and 21 (45.2 +/-9.3 years) non-fatigued controls.

Flow cytometry protocols were used to assess NK subsets and NK cytotoxic activity at various time points that included baseline (T1), 6 (T2) and 12 months (T3).

Cytokine secretions were measured following mitogenic stimulation of peripheral blood mononuclear cells.


Results
NK cytotoxic activity was significantly decreased in the CFS/ME patients at T1, T2 and T3 compared to the non-fatigued group.

Additionally, in comparison to the non-fatigued controls, the CFS/ME group had significantly lower numbers of CD56brightCD16- NK cells at both T1 and T2.

Interestingly, following mitogenic stimulation, cytokine secretion revealed significant increases in IL-10, IFN-gamma and TNF-alpha at T1 in the CFS/ME group.

A significant decrease was observed at T2 in the CFS/ME group for IL-10 and IL-17A while at T3, IL-2 was increased in the CFS/ME group in comparison to the non- fatigued controls.

Overall cytotoxic activity was significantly decreased at T3 compared to T1 and T2.

CD56brightCD16- NK cells were much lower at T2 compared to the T1 and T3.

IL-10 and IL-17A secretion was elevated at T2 in comparison to the T1 and T3.


Conclusion
These results confirm decreases in immune function in CFS/ME patients, suggesting an increased susceptibility to viral and other infections.

Furthermore NK cytotoxic activity may be a suitable biomarker for diagnosing CFS/ME as it was consistently decreased during the course of the 12 months study.

Now that at least looks like a proper longitudinal study with the participation of Dan Peterseon – unlike the cytokine BS from Mikovits/WPI. How close this study is to the reality of ME/CFS and how useful it will prove for research, diagnosis and treatment of ME/CFS is another question…

Dietary Villains

Forget saturated fat, forget dietary cholesterol – the two (possibly worst) dietary villains are trans fatty acids (from partially hydrogenated vegetable oils) and omega-6 fatty acids (from vegetable oils):

Hydrogenated oils have been shown to cause what is commonly termed the "double deadly effect", raising the level of LDLs and decreasing the level of HDLs in the blood, increasing the risk of blood clotting inside blood vessels.

A high consumption of omega-6 polyunsaturated fatty acids (PUFAs), which are found in most types of vegetable oil (e.g. soybean oil, corn oil – the most consumed in USA, sunflower oil, etc.) may increase the likelihood that postmenopausal women will develop breast cancer. A similar effect was observed on prostate cancer in mice.

More on the negative health effects of an over-consumption of omega-6 fatty acids (mainly from vegetable oil) can be found in the work of Bill Lands.

On Cereal Grains, Dairy and Milk

Some speculative predications:

1. Gluten is not the only agent in cereal grains that causes disease or health problems.
2. Celiac disease is not the only disease or health problem caused by the consumption of cereal grain products.
3. Lactose is not the only agent in (pasteurized cow) milk and dairy that causes disease and health problems.
4. Lactose intolerance in not the only disease or health problem caused by the consumption of dairy.
5. The diseases and health problems caused by both cereal grain and dairy do not necessarily manifest with gastrointestinal symptoms.

Digging for Dirt in Nevada

More interesting dirt from WPI/VIPdx/UNEVX:

Further email exchanges confirmed that “…XMRV testing is for both the culture and the serology tests…” and that “…ALL of the tests we run are validated and inspected by the State of Nevada,”

I asked to see the “validation data”, requested details about “the State of Nevada” and reiterated my question about why a “clinically validated” test (or tests) was withdrawn.

VIPdx replied that “The State does not “hold” this information. It is a proprietary record of the laboratory. They inspect but do not keep our records. Our validation records and test protocols are proprietary intellectual property of the laboratory.”

This is interesting too:

During the ensuing correspondence, and contrary to VIPdx’s statement to me, it emerged that “Vincent Lombardi is not the laboratory director, nor has he served in that regulatory capacity” and “they took this off their website today, it is incorrect.”

[The regulatory Laboratory Director (i.e. the person who represents the lab for regulatory purposes) was/is Sanford Barsky who, in February 2012, CFS Chronicles found to be accused of scientific fraud.
http://www.cfschronicles.com/1/post/2012/02/vote-of-no-confidence.html]

While I am pleased to see them digging up dirt on the WPI, it saddens me to at the same time that they ignore the contributions of our fine researcher and heroine at large Dr. Judy Mikovits. Just to reiterate:

January 22, 2009, Santa Barbara XMRV Seminar by Whittemore Peterson Research Director Dr. Judy Mikovits

Dr. Mikovits:
…
So you can be infected with retroviruses and be carriers and not be sick. And that’s one reason to be tested. If there is a genetic susceptibility, which we’re looking to, maybe a reason, an immune defect that was unknown as to why some people get sick and others don’t. You certainly want to know where the virus is, so if you’re a carrier you can protect your family.

Question:
Do you know how many have tested with VIP-Dx, and how many are positive?

Dr. Mikovits:
I don’t work with the company. They only take samples two days a week because it takes three days to do that, so they’ve done hundreds of samples in the last couple of months, and at least half of them are positive. Or 40 percent. And again, their doctors are looking at, the doctors who are well versed with CFS, so they’re immediately sending off. Dr. Cheney, Dr. Klimas, a doctor in Canada, Ellie Stein, maybe even Susan Levine in New York. I’m not sure, because it’s illegal for me to know those data because there’s confidentiality between the patient and the physician. But quite a number and, yes, it’s there.

…

Annette Whittemore: Earlier you said that 40% were positive [by VIP Dx]. So describe the fact that if you’re positive, you’re positive. But if you’re negative, you’re not necessarily so?

Dr. Mikovits: Yes, that’s correct. I answered that question based on the samples that came through there. Everyone who is positive is definitely positive for having the virus. But we don’t know what the people are, what the doctor is sending in, so the people might not have that disease. So it could be a clearly, distinguishing delineating marker – biomarker – or diagnostic at that point for various diseases. So a doctor might see a spectrum and say “I don’t know, maybe I’d better check.” Because the earlier you catch it, just like cancer. Early detection. Make sure the reservoir is (inaudible), make sure you don’t have that virus multiplying, and you can live a normal life. Don’t let it get (inaudible). You know the commercial out right now is “HIV doesn’t have to equal AIDS”; well XMRV doesn’t have to equal disease. If we keep it down, we keep the immune system strong.

Question: So what you’re saying is you may test negative but not be negative?

Dr. Mikovits: That’s correct. If you do it by the PCR. If you do it by VIP-Dx, at least right now, it’s running along the lines of (inaudible). We’ve got the antibody, and we’ve got three of the four tests. We’ll license it to anyone. We’re a non-profit institute, so everybody pays the same royalty, so any diagnostic company could do the gold standard. But right now, if you test negative, you’re not necessarily negative, even at VIP-Dx. Because we want to go do that serology test. Maybe we can’t find evidence of the virus. But you’ve been exposed, which would be a good thing because your levels are theoretically low, and you’ve just now made the antibodies, so you can prevent disease, as we did with Magic Johnson. But we don’t know anything about the immune response to the virus.

And this email from Dr. Judy Mikovits:

Email from Dr. Judy Mikovits on XMRV and ME
Posted by Birgitte on 14/03/2010
http://www.me-nyheter.info/?p=1191
(copy here: http://esme-eu.com/news/email-fra-dr-judy-mikovits-ang-xmrv-og-me-article304-7.html )

Dr. Judy Mikovits writes:
Regarding the ramifications of being XMRV negative. First of all the current diagnostic testing will define with essentially 100% accuracy XMRV infected patients. The negatives are more difficult as there are additional tests that can only be done in the research lab at this time and not in a clinical setting such as VIPDx. The most important test is to check your blood for an antibody to the virus. If you are positive in the serology test and have an antibody to the virus, you have evidence of infection but at the time your blood was drawn the amount of virus in your blood was below the limit that could be detected by the most sensitive test currently available clinically, which is the the one done at VIPDx. that means while you tested XMRV negative..it could be a false negative. …
…
But by definition if you have ME you must have XMRV. [????]
…
We will test everyone that tested negative to see if we can find antibodies in your blood and look for that variant that we describe..that is evidence of XMRV infection. …

Facts, please

I have no data yet. It is a capital mistake to theorise before one has data. Insensibly one begins to twist facts to suit theories, instead of theories to suit facts.
-- The Adventures of Sherlock Holmes

Even fictional characters know that.

Orac on Anecdotes

Orac on Anecdotes:

…

No one ever said anecdotal evidence has no value. However, anecdotal evidence as published in medical journals is far different from the sorts of anecdotes that homeopaths mean. to be an anecdote in a medical journal, a case report must be well documented beginning to end, with all history, physical findings, laboratory and diagnostic tests, interventions, and responses to interventions, all recorded as objectively as possible. This is far different than a homeopath's anecdote that she tried this super-diluted remedy or that and the patient got better. Even then, case reports are considered among the lowest, least convincing forms of medical evidence. Case series are only marginally better. As we say in the biz, the plural of "anecdote" is not "data."

…

… Anecdotal evidence, as has been discussed here so many times, is capable of seriously misleading patient and practitioner. Regression to the mean, confirmation bias, placebo effects, and a large number of other potential confounders can easily mislead. …

As alway, there is much more.