What will you do if XMRV turns out not to be the answer?

[Sing]

Alex,

I am always interested in what Sir Arthur Conan Doyle's views were. It would be great to have Sherlock Holmes working for us. When the ME-CFS mysteries are unravelled, it will be a great book for someone to write....

 

[heapsreal]

Its been a long time since I've been able to get any extensive testing done. I have a couple of bugs in my gut, my EBV was high but nearly as high as Lerner or Dantini thinks it should be to warrant concern, I was XMRV positive, I have low cortisol, virtually no growth hormone, high spinal fluid pressure (but not many other problems with the spinal fluid). I passed a tilt table test (but felt terrible during and afterwards), my MRI shows some weirdness....... I've never had NK cell or RNase L tests done....I had gradual onset - over a couple of months - so not that gradual but no flu-like onset... not much that really sticks out...

WOW cort with that how can u say u dont fit the viral group, even with high ebv titres i would be trying av's. Baclofen a muscle relaxer type med i have been using which has been increasing my sleep quality, not really putting me to sleep though, is said to improve growth hormone secretion, even low doses during the day help with that brain fuzz i get sometimes.

cheers!!!

 

[insearchof]

Tania~
You go, girl! Stand up for yourself like a woman! :victory: The personal attacks and bullying around here are getting out of hand; I'm glad you didn't let it get you down.

FWIW, I've found the Ignore setting to be extremely helpful in these situations.

"Asleep" made some rather astute observations on the strong double standards in this forum on this matter. I have para phrased and elaborated a little on the relevant parts of what Asleep said here:


1. Patronizing remarks, comments and terminology (as identified in this thread) designed to steer others = acceptable

BUT

Shining a light on this behavior and raising objections to it= bullying, bashing or a personal attack


2. Negativelabeling or characterizations of others as less than or questionable or vilifying others are all forms of bullying = acceptable

BUT

Identifying and objecting to such = bullying.


I consider this to be a good example of vilifying others Sickofcfs:

"Frankly, if those who claim "genuine" or "classical" ME want to take their ball and go home, fine with me. I think they would be doing themselves a disservice cutting themselves off from the bigger group, but so be it. Before they get too eager to run off, they might want to consider that Mikovitz, Lombardi, Singh, Alter, Lo, the Ruscettis, the Lights, and other American researchers are not researching the small, selective "real ME" group; they are researching the larger, inclusive group currently identified in the US as "CFS". Cutting themselves off from those researchers seems unwise to me, but maybe they have connections with researchers in the UK and Australia ready to dive in with a concentrated research effort on their select little group.........

To be perfectly honest, I'm getting pretty sick of all the efforts to claim "real" ME or "real" CFIDS, or even "real" CFS. We've all heard the strategy "Divide and Conquer". It looks to me that those people are doing the enemies' work for them -- divide us into so many small groups that we have even less funding, less voice, and less impact than we do now."

http://forums.phoenixrising.me/newreply.php?do=newreply&p=167553



Perhaps you would like to reflect on these matters, as well as the comment you made in this thread, which appears to me, as a classic form of bullying.

Sickofcfs, if you are going to throw stones, it might pay you to move out of your house of glass.

 

[insearchof]

[QUOTE

So I wont have a problem if XMRV is not the cause, or is not even associated with XMRV. There is a great range of good research at the moment, and any of it could lead to treatment. XMRV as a cause of ME/CFS is a working hypothesis. It is still the best fit for the data. It needs to be investigated until someone can prove it is not a viable candidate. Should this happen my focus will just move on, no drama. In fact I will be relieved - having a retrovirus is not my idea of a good outcome.

Bye
Alex[/QUOTE]

Could not have said it better and for all the reasons previously expressed it must be investigated until it is proven that it or a family strain is not a viable candidate.

Personally, I do not think they will ever be able to prove that XMRV or MLV is the cause of CFS (because of the definition itself, and I believe that they will never find the cause of CFS whilst the definitions remain) at best they might be able to say that it is strongly associated in a sub set of PWCFS. This sub set will no longer be recognized as having CFS but HGRV. The acknowledgment of a strong association of it in a subset of persons with CFS should enable it to be considered in the same way EBV might be in such patients.

At this stage I would say that whilst it remains a working hypothesis for causation, it is more than a hypothesis with respect to infection in PWCFS.

 

[justinreilly]

If XMRV turns out to not be 'the answer', I want a lot of robust research into DeFreitas retrovirus and other possible causes especially viruses like retroviruses, enteroviruses and cardioviruses. Come to think of it, why not study that stuff now? There's a novel idea (at least to NIH and CDC). : )

 

[Questus]

ixchelkali wrote:

We have patients around here who have been sick for 25 years and more. There have been other promising leads in that time (although perhaps none that seem to explain the constellation of symptoms as well as a retrovirus), and yet the patients have shouldered their disappointment and kept going. We are strong people; we've had to be. I hope that I'll live up to the example of the patients who have kept fighting, kept pressing on, and kept hoping. As my signature says "Keep on walking forward, never turning back."

Have to say I'm one of the 25 year people, and this is my approach....Keep trying!

This topic is so hot. There are several threads on it, and I've read them all. Sometimes it reads like a cage match. "Judy Mikovits in this corner and Ila Singh...two heavyweights" Am not going to debate the viral studies. Emotional investment in XMRV? No, I'm not invested.

Alex said what I feel:

XMRV as a cause of ME/CFS is a working hypothesis. It is still the best fit for the data. It needs to be investigated until someone can prove it is not a viable candidate. Should this happen my focus will just move on, no drama. In fact I will be relieved - having a retrovirus is not my idea of a good outcome.

Having a retrovirus in not my idea of a good outcome. I agree. I believe some people believe that because of Aids, a retrovirus being determined as the cause of CFS will be a slam-dunk in terms of finding a treatment. I don't think that would be the case here.

AIDS had Elizabeth Taylor, Elton John, and the Elizabeth Glaser Pediatric Aids Foundation...They raised millions for AIDS research. CFS does not have money pouring in from the community. AIDS activists also were raising money while tens of thousands of people all over the planet were dying of AIDS. CFS is a wicked disease, yet we 'look good' and we're not withering and dying in mass in a very dramatic fashion.

Ernie wrote:

The fact is you don't get better with this illness that's the point. I have tried diet, excercise, CBT, and every other treatment under the sun. Guess what? Nothing mattered or made one bit of difference.

Perhaps, but to all those who are tying everything under the sun...The point is not only to get better, it's to keep from getting worse! Yes, CFS can get worse as time progresses. Whatever you can do to try and maintain or improve function is worth working towards. I've lost considerable function in the last five years.

I'm currently making deliberate attempts to improve my functionality. I'm trying to read and understand Rich's methylation program, (am having difficulty understanding it, if anyone can help, I'd be appreciative.), and I have an appointment to see Dr. Klimas next month. In other words, I'm trying...Desperately.

Best to everyone with CFS/ME. I know each of you are struggling and coping in your own way, and I wish you God speed.