Mikovits speaking at UCLA on XMRV on Oct. 8

[mojoey]

I think CFS being legitimately compared to AIDS would be the best thing to ever happen to us, both in terms of research and PR

 

[August59]

The up side to the AIDS stigma is that a lot of the infectious disease dtrs went into to AIDS because there was a lot of money there and no shortage of patients. They also had the ability to use different anti-virals in different combinations to treat the patient as they needed to be (the best experience they could get). And now I think that AIDS is slowing down a little bit, which is perfect for us.

There was a statement about a possible "cure" by Dr. Mikovits and she is probably right (to a degree). Everybody has viruses, we just have to many that are active. If we can get anti-virals to suppress the viruses, or get rid of them in some cases, and then strengthen the immune system to the point it should be to keep them suppressed then we are essentially healed. I even think that if we can get close to being healthy then our bodies will heal some of the present damage.

I watched some of the CFSAC meeting this morning. (Stewart Legrice) and I think Dr. Mikovits (and team) is so far out ahead of them that they can't keep up. Granted, the NIH and BWG have things that they have to finish that are very important.

Dafodill when we go out dancing, I promise AIDS will be the last thing we think about. I do know what you mean, but I do think it will be a blessing in disguise.

 

[Cloud]

Seems to me that we have been tagged with a pretty awful stigma as well. People don't recoil from us as though we may infect them with a fatal infectious disease....but they have all gone away and left us to suffer alone. We are not believed about the severity of the disease. And unlike AIDS, our "stigma" keeps us sick because it precludes being taken seriously. We are already ostracized, so why not be ostracized and have the truth known.....sounds like a better proposition to me.

ME/CFS is indeed an Acquired Immune Deficiency Syndrome. But, we get the additional Neuro dysfunction.

 

[urbantravels]

I would rather be ostracized and have my disease considered an emergency, with teams of well-funded scientists working frantically towards understanding the cause and finding a cure, than to die of benign neglect because people think I'm just suffering from some kind of "burnout", depression, or vague tiredness, and I can be safely ignored until I "get over it" and rejoin the world.

 

[Mark]

true. plus atypical MS, autism, cancers will have it...

everything just seems to upsetting....no cure....ARV's being so toxic...reading about all the deaths..... all the tissue damage from years of the disease...only to be topped off by researchers still debating contamination!

its like there is never any good news for us

It is pretty overwhelming, isn't it? The concepts of incurability etc are hard to process in a positive way. But I agree with other posters, this focus on our condition as an acquired immune deficiency is overall both positive and appropriate for us. Perhaps it is easier for me because I have assumed for a long time that I have a permanent, incurable, immune deficiency. That has simply been my observation as I have partially recovered - what remains are the immune deficiencies.

The good news is that it is possible to live a long and positive life with such immune deficiencies. I have stabilised my life in a way that avoids the triggers that set off my own symptoms, and although that is a big restriction, it is a staging post where, most of the time, I can function for an almost normal working day, without a great deal of brainfog, pain etc most of the time. There are many, many people much worse off than where I have got to, and I feel very confident this kind of improvement will soon be possible for all of us. When you take away some of the edge, the worst problems, then it does all become a lot more bearable, relatively speaking.

And the researchers will debate contamination until they can no longer do so...but that really should all be resolved in the next few months, it really should be. Those people are more than annoying, but they will be silenced soon enough and then we can move on.

Finally, echoing what others have said, really there is no more helpful area we could be placed in than association with AIDS, from a research point of view. Researchers will flood into the area once the connection is established. It will be taken very, very seriously by the world at large. The legacy of AIDS will play in our favour, I think: people will at last understand just how serious this disease is, and the shock of that realisation should lead to an outpouring of sympathy. Yes, there will be stigma, from some people, and new kinds of problems. But I think the world has matured since the discovery of AIDS: I don't believe it will be as bad for us as it was for the first AIDS patients. The disgusting "gay plague" viewpoints, for example, won't apply, and those kinds of attitudes have in any case been effectively fought for many years: most of society has moved on somewhat since then.

Some people will still be horrible about it all. Those kinds of people are always there. But the majority of people are decent and compassionate, and once our condition is recognised for what it is, we will at last be the beneficiaries of that compassion in the way that we always should have been. I really do believe that we have such low expectations now, from the way we have been treated, that any kind of change will be positive. There really is nothing worse than being totally frozen out of research, understanding, treatment, social security, and even the compassion of friends and family. From this situation, any step will be positive. I really am filled with hope, even by the idea of being recognised as having an AIDS-like infection. This is a time of great transformation and hope, even though a lot of that can be very scary at the moment. Things can only get better...

 

[Stone]

I have said before that being associated with AIDS is not necessarily a bad thing for us by any means, but it's entirely possible there is going to be at least one little snag; the PWA's are most likely NOT going to like being associated with us one little bit and might not see us as being as sick as we truly are. They fought long and hard for what they have accomplished in terms of funding, credibility, treatment and patient rights through advocacy and so forth and have paid dearly for it. We have too, it's just that virtulally no one but us knows about our struggle including the majority of PWA's. We are routinely ignored, minimalized, underfunded, excluded, misunderstood, subjected to physical torture, publicly mocked as well as blamed for our illness; but there are few things considered less cool these days than discriminating against people with AIDS or making light of their suffering.

I don't know how things will shake out, but if we do end up at "AIDS doctors'" offices, it will be interesting to see how our relationship with the AIDS community develops. By the way, most of the "AIDS doctors" around here are just plain old infectious disease guys, some of whom see a lot of AIDS patients. I'm curious. Are there doctors whose practices are devoted solely to the treatment of AIDS to the exclusion of other retroviruses and such in other major metropolitain areas? Are "AIDS only" doctors very common?

 

[Daffodil]

i think they are just ID doctors, unless they happen to work at immunodeficiency clinics.

 

[Mark]

It may be unpopular with PWA, but I would hope we can instead find a lot of common ground; the views of physicians and researchers who deal with both groups might help...like this one:

"I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!"
– Dr. Marc Loveless
(infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, in Congressional Testimony, CFS Awareness Day, May 12, 1995)

It might also help, though, if we show that we recognise that where AIDS really is a more serious illness is in terms of mortality. In that sense AIDS is still a more frightening condition than CFS, really. Whilst this "walking funeral disease" they call "CFS" is, for many of us, perhaps only marginally better than being dead, we won't do ourselves any favours if we overplay this comparison without showing compassion for what AIDS patients face that we don't. Although some ME/CFS patients do indeed die of the disease, and our lifespan is almost certainly considerably reduced, I hope it's not controversial to point out that AIDS patients face a much worse prognosis in general.

 

[August59]

I'm pretty sure Dr. Klimas has made very similar statements as well. I'm pretty sure she treats both patients in her practice (one of her practices anyway) too. I wonder if she has any comment on how this would affect PWA's view on an association with PWC's.

Infectious Disease doctors got tagged as AIDs doctors because that became a large part of their clientele, but they also treat hepatitis, lymes and some cases autism. It only makes since that they would be the typical route for PWC to go.

If researchers don't come up with some type of biomarkers and/or standardized testing that is acceptable to the insurance industry, none of the doctors other than the ones we have now (that are pretty expensive) will become CFS doctors. Almost all testing and treatment for AID's is covered by insurance. The only draw back was the lifetime maximum imposed by certain policies that used to be reached by a lot of PWA's. The good thing is that Obama Care has made the lifetime maximum illegal starting in 2014 (maybe before). This where the science dragging it's feet and not funding research is hurting us badly.

 

[ukxmrv]

In the UK we have AIDS clinics at some of our major hospitals (and probably others that I don't know about). My local hospital has a drop in clinics that patients can use on demand. They offer an anonymous service were patients can be allocated a "number". The hospital also offers services to people with HTLV.

These clinics will not see people with XMRV and will not take it seriously (I've tried).

My experience in the early AIDS time was that patients sometimes didn't want to mix with ME patients as they didn't want to catch something from us. Remember conversations with activists who became quite worried when I explained about all the activated viri that I had. Friends who had AIDS didn't want me to hug them. ACTUP and an early AIDS group were concerned as well.

More recently patients in the UK have written to the Terrence Higgins Trust. They have "repositioned" themselves as a sexual health charity. Well, that doesn't include help for PWME with XMRV. It's been a brush off as well.

The predjuidice that ME and CFS are not serious illnesses were obvious in my dealing with the early AIDS community. However, that was contrasted by the concern that we might have "something" that could harm individual people. I don't blame this group at all. My sympathy is with them and the tragedy of those days. My early AIDS friends are all dead now.

A gay friend with ME (got sick at the same time as me) found his illness disregarded under the weight of the AIDS epidemic as well.

 

[August59]

There was a reference (link) to another thread, blog or forum that had more information about this seminar. Does anyone remember where it is or what it was?

 

[Andrew]

I was too sick to attend. A friend of mine attended, though. Here are his notes:

Judy Mikivits talk at UCLA 10/8/10
Here are some of the highlights of the talk as I understood them. This is not entirely comprehensive, just as much as I can recount from what I was able to jot down. I dont promise 100% accuracy and have put a question mark (?) wherever Im unsure:

Background
evidence of XMRV infection found in ~2/3 of CFS patients tested via PCR
infectious XMRV virus is detected in blood plasma of 90% of XMRV-positive patients
- more so than in the cellular portion of blood (PBMCs)
many CFS patients have disregulated expression of RNase L, an enzyme important for degrading the genetic material of viruses
many CFS patients have a low NK cell count (NK cells play a role in eliminating virus-infected cells as well as tumor cells)

XMRV (Xenotropic Murine Leukemia Virus-related Virus)
originated in rodents though apparently doesnt cause disease in rodents (?)
mode of transmission from rodents to humans is unknown, as is human to human transmission
- XMRV virus has been detected in saliva of infected patients (?)
a type of enveloped gammaretrovirus with only 4 genes: gag, pol, pro & env
env gene very similar to the homologous gene in murine (mouse) leukemia viruses (MLVs), gag gene has a deleted region relative to MLVs (loss of glycosylation site)
- genes of MLVs are activated in response to androgens and estrogens

Pathogenesis of MLV (?) infection in mice/rats
incidence of leukemia, lymphoma, MAIDS (murine equivalent of AIDS)
neurodegeneration, likely due to inflammatory processes
- virus replicates in brain capillary endothelial cells
- activation of neuroglial cells results in pro-inflammatory signals (cytokines)
- leads to leaky capillaries in the region of inflammation and neural damage
- CFS patient cytokine profile is very similar to what is seen in these rodents

Retesting of XMRV-negative patients from UK study
original study used PCR to detect XMRV gag gene (?)
retesting involved 1) PCR of env gene, 2) antibodies to detect env protein and 3) cell culture to detect infectious virus, all from blood plasma (?)
- 24/50 (48%) negative patients tested positive by this method (only 4% of controls)
- 80% of the positive retested patients had detectable XMRV env protein in plasma
- >80% of positive retested patients had endogenous XMRV-specific antibodies
- Dr. Mikovits emphasized the importance of testing via all 3 methods (which is done at
WPI for $350) from plasma, and to test for the env gene/protein

This was the best I could do, so I hope you find it informative. All the best,

 

[Esther12]

Retesting of “XMRV-negative” patients from UK study

? How did they get to re-test these patients? I'd be surprised if Wessely would co-operate. Some confusion in the note taking maybe?

Has your friend got CFS? If not, it was very kind of them to take some notes for us. Thanks for passing them along.

 

[lansbergen]

? How did they get to re-test these patients? I'd be surprised if Wessely would co-operate. Some confusion in the note taking maybe?

Has your friend got CFS? If not, it was very kind of them to take some notes for us. Thanks for passing them along.

What has Wessely to do with WPI retesting their samples?

 

[Esther12]

What has Wessely to do with WPI retesting their samples?

Ahh.... I thought they were talking about the negative London study which had been published. They were probably talking about their own study though. Whoops.

 

[Andrew]

I don't know about the UK studies, but it's possible negatvie subjects took the initiative to get tested by WPI.

 

[Cort]

from yahoo group:

"Dr. Mikovits XMRV Lecture Summary at UCLA

She's been addressing the problem of other labs/people not being
able to find the XMRV by teaching them on how to do it. She is breaking
up the disease into 2 parts. 1) the virus 2) the individual's DNA. She
is not sure if this is the only virus in CFS patients, when in fact she
has seen people with 2 and 3 virus's. She has identified 6 types of
defects in a persons DNA that makes them susceptible to the disease and
other diseases. She believes that a combination of AIDS drugs can
potentially cure a CFS patient. When asked about what type of doctor
should administer the AIDS drugs, she responded; an AIDS doctor. I
guess that there can be severe consequences, including liver failure.
Which is probably why she was presenting to AIDS doctors. She also
asked that they (UCLA) seriously consider clinical trials.

I felt that the UCLA doctors were receptive. There were several
questions and comments that were neutral to positive."

That is very interesting because that, I believe, is Dr. Lipkin's approach to autism and perhaps CFS; its not a one hit thing - its a pathogen or some other insult combined with genetics - or gene expression - which can change over time. I didn't know they were doing genetics work there as well.

Different genetics, could, one would think, play a role in differing responses to drugs. That is well established with regards to pain drugs; researchers are slowly figuring out which genotypes respond best to which types of drugs. I wonder if that has been shown in HIV/AIDS?

 

[Cort]

It may be unpopular with PWA, but I would hope we can instead find a lot of common ground; the views of physicians and researchers who deal with both groups might help...like this one:

"I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!"
– Dr. Marc Loveless
(infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, in Congressional Testimony, CFS Awareness Day, May 12, 1995)

[

Great quote! Whoever that guy was he had guts and yes, Dr. Klimas made a almost identical quote - actually several times; I think she said it first about ten years ago and then recently in the NY Times

 

[George]

The 1-2 punch would make a lot of sense really. I would think it might even be a 1-2-3. Just a thought, (some slobber) but if you factored the following:

1 - 2 Genetics, let's say if you have genetic defect A, B, C and you add XMRV you get ME/CFS (or what if you have A,B and say F or I that could describe the variations within the illness.)
D,E,F and you add XMRV you get Autisum
G, H, I and you get something else
No genetic defects or defects in non immune system areas and the virus has no effect or if you get cancer you get a more aggressive form of it because the virus seems to play a major roll in inflammation response.

3 - Add a another punch and that would be lifestyle at the time of illness such as smoking, drinking, not exercising, exposed to pathogens in teaching or medical field or public work, stress from grief or life events, eating habits and any other you might want to toss in, and this could add to how bad you start out with the illness. So depending on these factors you may start out (0-dead, 1-2 bed bound, 3-4 barely able to get around the house, 5-6 able to get around the house but not able to hold down a full time job, 7-8 able to hold down a full time job but recover verrrrry slowly, 9-10 never knew that you had/have XMRV just thought it was a really bad cold) Where you start out can be very important to where you end up I would think.

For me I smoked occasionally, drank occasionally, ate McDonalds occasionally, worked 60 hours a week in an environment put me in contact with pathogens constantly and often over trained because of guilt for the days that I didn't get to train. I had to change all of those behaviors just to get to an even place where I wasn't going "downhill" anymore. It took two years just to make those lifestyle changes and move from a 1-2 to a 3-4 these days I'm like a 4.5. (grins) I look forward to being able to drive more than a mile or two, that's my next goal.

 

[Cort]

Nice slobber George

I like the hard driving lifestyle addition - something else that stresses the system - somehow (an infection) leading to some dramatic, dramatic system reset. I really like Dr. Vernon's idea of 'system reset' because, at least, in my case my system really seems not to want to change; its like its fixed in a new position. Dr. Cheney believes something similar.