XMRV-positive Doctor Begs Us to Fight for WPI

[jdeckoffjones]

I don't think the science is going to hurry up. The WPI is dependent on private donations. I think it will be patient driven if the drugs work. I think it is all about quality of life and what there is lose. I was an alternative doctor, after my emergency medicine career. I believe that all drugs are poison, but that doesn't mean that you might not want to try one.

I am very impressed with the comments on this thread. Nice to be here.

Jamie

 

[subtr4ct]

One more comment regarding waiting until there is unanimous opinion about anti-retroviral therapy for XMRV (as if such a time will EVER arrive -- there are still HIV denialists). Carefully consider this (message#13) from another thread. How long do you really want to wait? How much more of your life and your chances for recovery do you want to watch slip away? I think Dr. Deckoff-Jones' open letter is spot on.

Personally, I know that if Mrs. subtr4ct tests positive, we will be starting ART. If our current physician is not helpful, we will be seeking a sympathetic infectious disease specialist (or perhaps figuring out travel arrangements to Santa Fe )

 

[Advocate]

I don't think the science is going to hurry up. The WPI is dependent on private donations.

I was persuaded by your letter to send another donation yesterday to the WPI. I hope in the future to engage in more extensive fundraising.

I am thrilled that you have posted here, with your commonsense approach to treatment.

Advocate

 

[MEKoan]

I think Megan raises very valid points which, in the context of the politics of ME/CFS, should not be denied. WPI led us to this point in the history of this illness. Now is not the time to abandon their good counsel.

While I can understand a gravely ill patient and physician quietly using ARVs off label when there is no other option and good indication (XMRV+) that it is an appropriate strategy, I'm not so sure that trumpeting that at this time will help rally support for WPI.

And, no matter what we may know about WPI not being timid, they are desperate for funding which is not forthcoming. I do not see how it will benefit anyone to make this a more contentious issue than it already is.

IMHO

 

[subtr4ct]

...neither of the examples we have here are doing that to any significant degree. In one the person has tested negative to XMRV and is taking the drugs (and I understand her reasons for doing so). In the other there appear to be no results at all.

Megan (or anyone else), I have been following the XMRV- patient's ART trial, but I have not noticed another person who is documenting their ART experience. Is this other person XRMV+? Could you point me towards the relevant posts/blog? Thanks

 

[glenp]

DR Jamie

Thank - you so much for coming here and sharing. It means so much. I have not yet been tested for XMRV, am waiting until a more accurate test is available. Having suffered irreversible gentamycin poisoning and wondering how much the gentamycin has to do with my illness makes me extremely cautious in any drugs that I may take. Again thank you for being here for us.

glen

 

[Ecoclimber]

Playing with the Lives of Patients

This was a re-post from Osler's web.

Word comes from the UK of Pamela Westons assisted suicide at the Dignitas clinic in Zurich, Switzerland. Weston, in a letter written before she died, described her eighteen year nightmare of M.E., which began with a flu-like malady in August, 1991.

I can no longer write professionally any more. There is nothing else I want to do. Nothing else I can do. I am too weak, too tired.

She described her happy life" as a classical musician, teacher and writer up to the day she fell ill.

ME put a stop to all that, she wrote.

During her 18 years of illness, years during which she experienced a decline that resulted in no fewer than four heart attacks in her final two years, she was offered little by way of treatment, what she was offered did not help, and she suffered the double insult of being caught up in a mass delusion fostered by psychiatrist-quacks in England and the U.S. that her disease was psychological.

Ive had a wonderful, happy life. Now it's over. What I want now is for campaigners, such as Action for M.E, to use my story to push the Government hard on medical research, Weston wrote sometime before she took barbiturates on September 9, 2009.

Recently from Australia:
Theda's desperate fight against a chronic killer
http://www.watoday.com.au/wa-news/thedas-desperate-fight-against-a-chronic-killer-20100301-pcvv.html

Theda Myint had the world at her feet.

Bright, beautiful and vivacious, the budding investigative journalist was weeks away from starting her dream career.

Now, 10 years later, she is fighting for her life.

*****************

There are forces that are trying to undermine the recent discovery in Oct. 09 but the cat is out of the bag and there are many researchers examining the significance of xmrv.

With that being said, there are many people that are working tirelessly behind the scenes unbeknownst to many in the community to bring a coordinated response to this illness and news will be forthcoming in the near future concerning those efforts. At this time, I believe a scatter gun approach against perhaps the 'wrong targets' is not the most effective and efficient response to this critical issue .

I would encourage donating to WPI by check or other means via PayPal etc. would assist immensely in this fight. Can you imagine with millions of patients contributing even if it's just a buck, can create an incredible boost to their ongoing research program! SO GET THE WORD OUT! :victory:

 

[Advocate]

I myself tested xmrv + in october. Of course I have been thinking about antiretroviral treatment as well. However I will wait for the clinical trials that hopefully start in the fall. Also, I have a lot to lose. My health is not so bad as compared to many people in the forum. I can function pretty well.

Hi Mij,

Thank you for letting us know that you are xmrv+. That's good news that your doctor read an article about the XMRV/CFS association. I'm beginning to think Canadians are a superior people.

Advocate

 

[leaves]

Hey advocate,
sorry but that was me that mij was quoting there ( not to say that Canadians aren't superior ofcourse)

 

[Megan]

Megan (or anyone else), I have been following the XMRV- patient's ART trial, but I have not noticed another person who is documenting their ART experience. Is this other person XRMV+? Could you point me towards the relevant posts/blog? Thanks

I was referring to Jamie Deckoff-Jones MD. The first post in this thread said she was taking these drugs.

 

[subtr4ct]

I was referring to Jamie Deckoff-Jones MD. The first post in this thread said she was taking these drugs.

I think it is misleading to describe Dr. Deckoff-Jones' trial by saying "there appear to be no results at all" (as you wrote in post #20). This sounds to me as though the therapy is having no effect, when she has clearly indicated that she is just not yet ready to report her results. Two hints, though: 1) she says that her and her patient are "definitely not worse" and 2) she wrote the letter to begin with. Those hints definitely don't suggest that she is doing more harm than good. That leaves you with one anecdote of an XMRV negative person who has shown only modest improvement on ART (so far!).

Regardless of how the anecdotes of ART are turning out, I don't think that anything anyone writes on the forums here is going to negatively influence the funding situation of the WPI. Recent comments on various threads here have expressed envy regarding the relative funding levels dedicated to HIV/AIDS and autism research. Are those communities known for their shyness? Anyone remember this? What about this? Apparently haven't hurt their respective causes. The squeaky wheel gets the grease. Everyone ignores the silent wheels, assuming that they are doing good enough. CFS has been a silent wheel for the last three decades. Is a public display of desperation on the part of some very ill patients really going to make the outside world think "seems like those people don't need any help. Lets send some more funding over for acne research".

People make things happen. Ladybugmandy, Dr. Deckoff-Jones, Dr. Miskovitz, witchywoman (on patientslikeme) are pioneers who are each in their own way making a difference. Some may fail ultimately. XMRV may yet turn out not to be a causative factor. But telling these people to shut up is not at all going to push things forward.

 

[garcia]

Recent comments on various threads here have expressed envy regarding the relative funding levels dedicated to HIV/AIDS and autism research. Are those communities known for their shyness? Anyone remember this? What about this? Apparently haven't hurt their respective causes. The squeaky wheel gets the grease. Everyone ignores the silent wheels, assuming that they are doing good enough. CFS has been a silent wheel for the last three decades. Is a public display of desperation on the part of some very ill patients really going to make the outside world think "seems like those people don't need any help. Lets send some more funding over for acne research".

Brilliant post subtr4ct! We as a community are damned if we do and damned if we don't. So better to be damned for being proactive.

When McClure claimed that patients were taking anti-retrovirals either she was lying (or possibly more likely) she was fed a lie (Wessely springs to mind). If people were taking antiretrovirals how did she possibly find out? No way the nhs would prescribe them.

 

[jdeckoffjones]

Thank you for the lucid post subtr4ct.

I have started a blog at http://treatingxmrv.blogspot.com/

I am planning to share the medicine and science there. I have linked to pdf's of recent papers that are essential reading for any XMRV positive person considering specific antiretroviral treatment or any physician willing to consider prescribing it.

Best wishes,
Jamie

 

[Cookie Monster]

When McClure claimed that patients were taking anti-retrovirals either she was lying (or possibly more likely) she was fed a lie (Wessely springs to mind). If people were taking antiretrovirals how did she possibly find out? No way the nhs would prescribe them.

I totally agree Garcia, XMRV has only been temporarily shot down in the uk because of the way our NHS service is easily manipulated by the government spin-professionals. IMHO once a person has a positive test result for XMRV they are fully entitled to try and switch to antiretroviral treatments. Its a personal choice i feel, one that includes considering how unsatisfactory your current quality of life is. Given that CFS treatments are so poor i see no need to wait around on the UK's behalf.

Most people feel their ultimate CFS state was kick-started by a mystery viral infection. This virus has been isolated. People have been tested and are positive. Antiretroviral treatments are available and aids patients, for example, do well on them. If i lived in a country whereby i had a free choice to attempt to change my life now rather than wait i would consider taking action too. By doing so i would ofcourse take on some of the consequences of any negative drug reactions but there are still risks attached to taking anti-depressant pills which are readily dished out at present to treat CFS anyway.

So please dont hold back on your treatment for the sake of others. Surely that in itself plays directly into Wessely's hands. I also think its important to note that McClure only baulked at the general use of anti-retrovirals in CFS patients. I dont recall that she went as far as to knock antiretroviral use for those with CFS who have actually tested positive for XMRV. Again, like Garcia said, nobody here under an nhs doctor would have been given antiretrovirals anyway - this has to be pure fabrication.

 

[quanked]

Megan,

thank your for taking the time to respond. If I understand you correctly you are saying that the WPI will be blamed for patients seeking retroviral drugs from their medical providers and this will reflect badly on the institution regardless of the fact that they are not to blame.


This top-down way of living does not work for me. It smacks of patriarchy/hierarchy at its worst. In fact, I suspect that if the WPI’s research is going to be well funded and spurred on it will have to come from the grassroots so to speak—from us—unless there are others like the Whitmore’s, waiting in line, who have the money and the motivation to fund this research indefinitely. Some of us are functioning better than others. It is not an impossibility for those of us with CFIDS/FM/ME to do some serious organizing and fund raising.


Top-down in the medical community is just the way it is. I cannot count the posts I have read of CFIDS sufferers who have been victimized by this kind of organization—from the office help to the doctors—they expect us to be calm, compliant patients or we are labeled hostile or difficult to deal with or kicked to the curb. Asking us to limit our choices or behave in a certain way so we do not agitate these European researchers into trash talking about the WPI is not the path that will lead us to healing and is not unlike the medical community wanting compliant and uncomplaining patients.


No matter what the WPI does these people are going to try to marginalize, denigrate and minimize what Reno does. If some of us seek out treatments they do not approve of and will criticize—so what? They were not published in Science.


I appreciate your warnings about the drugs. Speaking for myself—I do not even know what these drugs are or if I would even consider taking them. I have not got that far. But I do know that I am sick. I do know that the quality of my life is very poor. I also know that I would not take a drug without knowing the risks and weighing them carefully.


I think that the WPI can take care of itself. It has proven that it is not going to buckle under because the McClures of this world cannot conduct themselves professionally or ethically.


As I sort through my thoughts and feelings about this matter two things come to mind—we need to ask the WPI what there thinking is on this. The other is PR and other communities made up of those suffering with CFIDS/FM/ME need to pull together a petition—letter writing campaign or some such thing and put forth a kind of verbal slap down (respectful of course) of these European researchers. I mean we are the ones most impacted by their misinformation, misguidance and disrespect of those of us with these dd’s in the end. We need a strong voice and reaction here.

 

[jace]

One new focus for awareness and fundraising was recently started on the Phoenix - it provides a charming way of getting together that most folk will be able to contribute to.
Check out http://www.sockit2mecfs.org/

The initiative is in it's infancy, and has huge fundraising potential. We can all send a few bucks every month to the WPI, whatever we can afford, and most of us can send a sock as well - which may be a game changer, given the right support.

Judy Mikovits said she would use a sock garland to decorate the Invest in ME conference on 24th May, so we need to get on it

 

[Megan]

I totally agree with those above suggesting that we should not be shy about patient activism. So I feel my views have been somewhat misrepresented here. There are many forms of activism. I think the AIDS activists are exactly the people we should be talking to as they have been there before us. If we could shut down the Golden Gate bridge then great! My concern was specifically with people advocating that others take particular drugs at this point (and not that they limit their own choices). I think I have said all I can say on that.

I also don't really care either what the UK players say, except that I do care if it contributes to further science getting shut down. For that reason I still think it is important that their arguments are countered wherever they can be. I think patients have been great at doing this when media stories and scientific articles have been published (eg in response to the PLOS One study or the Health Report interview). At least the producers of that program are now aware that there is another side to the story. This in itself is a form of activism. I would not like to give up on the idea of more scientific funding coming to the WPI. Having said that, if they need our money now then I think everyone should donate. I have already donated to the WPI and will do so again.

 

[ramakentesh]

You cant jump the gun and Im surprised that a doctor of all people would suggest otherwise. It has not been conclusively demonstrated that CFS is caused by XMRV infection, it has not been definitvely demonstrated that XMRV is even higher in the CFS population than in the general population. You cant start treating people on the basis of one limited study.
We have all waited a long time for better treatments and it is frustrating but at the end of the day Im surprised how many people have jumped on this band wagon considering the 25 year history of false leads... Or maybe im just bracing myself for the usual disappointment?

 

[mgand]

Dr. Deckoff-Jones, I have had CFS for 22 years. I am extremely sick and getting desperate. I would like to try the antiretroviral drugs. How does my doctor get in contact with you? You can email me at mgand08@gmail.com. Thanks, M. Gandelman