Discussion in 'XMRV Testing, Treatment and Transmission' started by Advocate, Apr 24, 2010.
I agree with you Megan!
Int'l payments on Paypal
I live in ireland, and have donated previously from the WPI site connection to Paypal. I used my Visa and had no problem.
I listened to the little radio clip on the WPI site (news and events) last night. I also read the letter underneath to DSM. It gave me goosebumps, such lucidity and restraint, it put into words the fury I felt and all the arguments that have been going round in my head.
I'm so excited by all this, I'm in touch with a few a few other young patients with ME/FM. They are not as obsessive as me with keeping up with the XMRV news, they have young kids and just about cope as it is. I do love passing on the good news.
Another beautiful afternoon being spent in bed so that I can hold on to my job. Hard to imagine that some day I could live normally. x x
It is good to me either way. If i took such drugs and got better... *party*. If i became much more ill and/or died, my family who think i am crazy would sue my doctor. They would try to nullify my informed consent. I would love to see a high profile trial where my medical history was argued by expert witnesses and the medical profile of the typical ill me/Cfs patient is brought squarely into the public eye. There is going to be plenty of fighting no matter what people do. Peace, S
Should really severely ill patients get this powerful drug? If they are really falling apart - and things look grim - I don't see why not... The drugs will probably either help or who knows? Send them spiralling further. Its a tough question. She was not on the edge of death for sure but she was apparently pretty darn ill.
With my sensitivities to drugs and supplements it would be an odd thing for me to try such a strong drug. Of course I knew I was in the subset of patients that it worked for...I'd do it in flash.
(I removed my extraneous thread - which Megan replied to in her post below )
Cort, this has already been posted on another thread. FWIW my opinion, as already posted on the other thread, is as follows:
I applaude any call to help the WPI as they are really fighting for us. But the way I see it this call for for the use of anti retroviral drugs will only hurt the WPI (and us) much more than any of the donations from this thread will help.
The advocating the use of retrovirals by patients, and more importantly the pushing of them by doctors, is being and will be used against the WPI (rightly or wrongly). The WPI and the leading CFS doctors in the US and elsewhere have unanimously said we should NOT be trying anti retrovirals at this stage. The UK group have already misrepresented this situation publicly to justify their own actions. I have also heard the WPI run down to me by a very senior player in this game on the basis that the 'patients will want to take AZT'. We are simply feeding ammunition to our opposition. Like it or not this is political and whatever we post here can easily be misused against us. Dr. Deckoff-Jones obviously means well but is right when says she is polically naive.
I do see that Dr. Deckoff-Jones is heartfelt and raises some legitimate questions regarding treatment. But surely it would be better if she advanced these arguments within her professional arena rather than advocating them on patient forums.
I understand that some patients may feel desperate enough to try experimental drugs and that is their perogative. This is the lot of people with untreatable illnesses, not just cfs. But no need to plaster it all over the net and advertise/advocate it to others when we are not medically trained.
I find the other thread we have going on this forum also disturbing for the above reasons. The WPI can use all the help they can get, not extra curve balls accidentally thrown by us.
Good points. Think of the outcry and the backlash if god forbid, someone dies on AZT(does that happen?) - or suffers permanent damage. She seems to think the drugs are pretty safe but they do come with pretty hefty warnings. She clearly thinks the medical community has been too cautious. I imagine they wouldn't be if they were as convinced as she is that XMRV is it. I hope she does well.
Jamie Deckoff-Jones MD
Would you please come here and talk to us about this!!!
My question is what if people start getting better? Won't that show XMRV is causing the symptoms? They had to do this for Aids patients in the beginning I think. Especially for the sickest if they feel they want to try. What kind of life is living in bed all the time so sick you can't do anything. I'm not at that point but if I were I think I would try. I feel like I've spent years being experimented on anyway. I think it should be a person's choice.
Yes Robyn, people getting better via anti-retrovirals would provide more evidence for causation!
I am not understanding your reasoning about retrovirals and damage to the WPI. Can you explain--maybe it is obivious to others but I am just not getting it.
I thought I explained it as best I could, but here is some back up information:
See this transcript of Dr McClure (of the Wessley study) on the Australian radio http://www.abc.net.au/rn/healthreport/stories/2010/2867629.htm#transcript
She claimed, among other things, the negative UK studies were rushed to print because anti retrovirals were being offered by doctors to patients. As far as I know this is untrue (many people here would see other political reasons why these studies were rushed - eg to try and shut down further research). But now we have generated a thread to provide her with supporting evidence and give them more credibility! Judy clearly stated in Cort's interview that further XMRV/CFS research has been threatened by these studies. I know the WPI have not pushed these treatments, but by implications they are being blamed because they have publicised their results any got us all excited and hence some asking for retrovirals.
As I said in my previous posts I have privately heard, in circles that matter, that the WPI have trumpeted their results leading to this reaction among us, hence they are unprofessional, not to be dealt with etc etc. I think this is unfair criticism of the WPI as they and other leading CFS doctors have also been equally clear in their publicity that we should NOT be using these drugs at this point. And they did have something big to announce so the publicity was justified and we may not have got scientific momentum on it without it. I think patients would have reacted no matter how it was done. There were more than enough patients who went onto Valcyte following the initial Stanford trial and that was minor compared to this.
At the end of the day it doesn't matter if the criticism is fair or not. That will have little relevance if smearing of the WPI ends up in damaging their reputation or hurting further studies.
As a patient I have been interested to read the threads on antiretrovirals as POTENTIAL treaments as these give me hope if the science holds up, and there have been some good in vitro studies on this come out. But this is a very different thing to advocating that people take them now. The simple fact is that most of the medical profession see anti retrovirals as drugs with serious side effects and we don't yet know what they might do to people with CFS - see Gerwyn's quote below. And most of us don't have the medical training to be going into this territory.
Sorry but the cat is out of the bag. No use in trying to stifle discussion. People are going to talk and some are going to experiment just like they have every time a new theory comes along, credible or not. WPI is not a wimpy group. they have confronted their attackers. As mentioned, they have also prudently warned against risky treatment. I suggest that we just give them our support. People are going to say whatever they want and the net is way too big to stop it. I really think this is a time for us to be bold and stick up for each other. Strategies born of fear will not stop those bent on attacking. no matter what happens they will always bend the truth to suit their ends /rant
Well, every drug I've ever taken comes with some pretty hefty warnings. It becomes a matter of living life from your bed, and doing so while every single person around you screams that you are just lazy, that you aren't trying, etc., or actively trying to get out of that bed. And mind you, there is no one among us who wants to live life from our beds. Anyone who has lived with this for more than 2 years just plain wants out. That isn't to trivialize anyone who is in the first stages- for me, they may have been the worst because I just plain had Mono (Glandular Fever) straight through, and yet I was told "Mono lingers, get out and do stuff" so I did it. I forced myself. I paid a hefty price. So I know those first two years are hell enough. At least in my case, though, I kept being told it would pass. So maybe that allowed me some more hope than someone today feels when they get this diagnosis within the first two years.
That said, with a small child now and with one on the way, I can't take a drug that has such a hefty side warning anymore because it could be a matter of me living 10 more years (or possibly more), even this way, or me possibly taking a pill that could make me worse or end my life sooner. At some point, my daughter may see me as a burden. I don't know if that will be mitigated by her having Down syndrome, or if it will make her angrier. But for the most part, kids want their parents to be alive more than anything else. So I have a duty to wait until there's proof enough that if I take something that strong, it is justified. But sure, I was one of those who rushed out and pressured a doctor to prescribe Valcyte. Sure, if I didn't have a child right now- and of course, if I weren't pregnant- I'd be discussing this with my doctor seriously right now.
I may have managed to be more active in my life than some with this disease, but it's been done under serious, serious outside pressure and always with serious, serious consequences, but those consequences have always been underplayed by those around me. Instead of them being consequences of doing too much, they are seen as me giving up, just when I was finally fighting. After 25 1/5 years, I still can't decide if my life has been made better in balance because I have pushed myself so hard and have at times held a job and seemed perfectly fine, or if it has been made much worse because instead of resting and possibly recuperating, I've pushed. Mind you, to everyone else, my life is still a shambles because of all the jobs I have lost, because of the things I don't do (my daughter probably has more canceled play dates than any other child on the planet). But compared with some with this disease, I've heard it looks pretty good.
And just in case this post shows up some time in the future and my daughter or future child reads it, I am not implying that pushing myself for their sakes isn't worth it, or that God forbid, I regret having them. My daughter is the first time I've felt happiness since very early in this disease, when I still thought one or two more nights of good sleep would cure me. And it wasn't the unqualified joy she has given me. Without them, I'd be clamoring for the drugs even though to some, I appear sometimes to be in perfect health. Briefly, but still, I know there are many worse off than me. So I can't qualify all of this by saying, "Only the worst of the worst should get these drugs." No one can measure the suffering I've been through, the shame of calling in sick to a job over and over again because I can't make it through another day. I know that someone who cannot get out of bed from day one of this disease is worse off than me. But then again, while recovering from West Nile Virus in 2002, my husband pushed me to drive a car halfway across the country and the whole way, all I could think about was if I was going to kill someone. I couldn't read a map then, I could barely think, so I had to follow the moving van closely or else I would have been lost somewhere along the way. Still, while recovering and my husband treating me like I was just being a baby- and I had entirely lost the ability to sleep at that point (and I had no doctor in this state) so I was appearing pretty much catatonic and severely depressed- I was walking the dogs. With my face half paralyzed. Without having gained back much feeling in my hands or my feet. And I wound up entirely bedridden for at least a year and a half after a month of that, and 75% percent bedridden for another year after. But all that anyone else sees is that I was "fighting" in the beginning. Then I gave up.
And I do apologize for the length of all my posts. I am a writer by nature, but I know these are very hard to slog through for someone with this disease. I can attain brevity when I speak, but when I write, forget about it! It's the only time I really express myself anyway.
I agree WPI need our support. I have said enough and have probably got too heated about it. I will simply add that we can all say what we want on the net, but we are also responsible for what we say.
I understand people's need to experiment, provided they are fully informed. I too considered Valcyte at the time of those trials but didnt do it because my father was dying of prostate cancer at the time. I have also experimented with other things (some helped, others not). My life is going by too. However, I feel genuinely conflicted about this case (enough to come back an reedit my post), as I understand that these drugs are more serious, perhaps in a different ballpark to some of the other things we have experimented with. I'm not a doctor but my CFS doctors have warned me as such.
I was replying more to Cort talking about the hefty warnings. I understand your point- until the science is in that proves the retrovirus theory, until drugs are used in it that are relatively safe, people getting anti-retrovirals may end up hurt worse and the WPI will look irresponsible in releasing their info.
Time to parlay recent wins, not back down
Here, here. Not the time to be timid. Also, as mentioned on another thread, have a look a this (registration required). This XMRV positive woman, who was very ill with CFS and fibromyalgia got 85% better after 1.5 months on a low dose of AZT, and was ~95% better a couple months later. It would not take too many anecdotes like this to make causality all but certain and to consummate the revolution.
I respect Gerwyn's concerns re: AZT, and maybe other therapeutic agents should be preferred. But finding that a retrovirus is the likely cause of one's living hell and then refraining from treating the retrovirus just doesn't make any sense to me. The WPI didn't get this far by worrying about what the psych lobby thinks. Why start now?
I's not just the psych lobby, that's what concerns me. And we have to consider risks of the drugs too - see revised post above.
God, i've got to get off this computer!
Each person needs to make their own decision with an informed physician. Would that there was such a thing available to each of you!
In general, the drugs are pretty safe. There is vast experience with AZT. You can grow a healthy baby on it. Many in this group have tried much more dangerous drugs. Many have suicidal ideation. I don't see what there is to lose for someone that wants to die anyway, as so many in this patient population do. For the sickest, it may be better to take a chance. If drug toxicity happens, you can always stop the drug. Idiosyncratic and allergic reactions can happen with all drugs, but HAART is a relatively safe protocol compared to anything being offered pharmaceutically to CFS patients. In my opinion, psychiatric medications can be more dangerous to the inflamed brain than specific antiretroviral therapy. And then there's antibiotics...
From the little bit of anecdotal evidence I have, I don't think that AZT works alone, except for one woman reporting on a CFS list, with whom I have not personally communicated. Raltegravir will probably be the drug of choice. But treating HIV has taught us to avoid monotherapy. So if you want to be part of the experiment, I believe that the best course of action at this time is 2 drugs in HIV doses. There is a tendency for drug sensitivity in this patient group, but I don't think that it is advisable to play with the doses, my opinion only, obviously based on no real information. Just because XMRV doesn't kill as quickly and doesn't appear to mutate as readily as HIV, it should not be underestimated. My feeling is that if you are going to hit it, hit it hard and keep it shut down. The lessons of HIV will have to be the road map for now.
Many are asking me how we are. I don't feel that I can responsibly report that yet. There is more information available now than when I made my decision. This should not be about us. But for those who are concerned about us, we are definitely not worse.
Jamie Deckoff-Jones MD
@Dr. Deckoff-Jones: I am sure I speak for many here when i say thank you very, very much for your advocacy and advice. Best of luck in your personal battle. I know there are many of us here who would very greatly appreciate updates on your experience when you feel that you can share them. Thank you.
Thanks Jamie for coming here to share your story. Also; Welcome to the Forums! I hope you stick around, we'd love to have you .
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. Taking retrovirals is.. scary. And although I hope it is, I am still not 100 % sure that this is the cause of my problems. If I am xmrv + then my mum is too, but she does not have cfs. My grandmother did though...
Oh well i just hope science hurries up!
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