Poll Regarding Use of ARVs

Recently the New York Times ran a column about CFS patients in San Francisco getting free HIV drugs possibly at the expense of HIV patients competing for the same pool of free drugs from the manufacturer. However, the column didn't have any firm numbers regarding CFS patients so there was no way to tell if it was a trend or an isolated example. At Cure Talk we wondered. So we are asking you the patients.

The results of this poll will be reported on Cure Talk, but respondents to the poll will remain anonymous.

I wouldn't touch them with a ten foot pole at the moment and I would have to be damn well sure it would help significantly to start taking those (meaning I want solid science backing it up). I can understand why people are tempted to try them though, it's hard to feel this bad and we all want to get better, but there are other things to try until the science progress on that topic.

I'd rather try something like GcMAF right now if it wasn't so expensive, at least it occurs naturally in your body. I'm not really inclined to ingest synthetic molecules to begin with, so I'm a bit biased here.

why should we partipate in this survey? why give those who dont want us to take ARV's any ammunition?

ARV's are proven safe in HIV, so prescribing them off label is no difference to other meds being prescribed off label. I agree with daff, its just giving people who think me/cfs is a psych condition more ammo to throw back at us. I think most of us have gone down the psych line with antidepressants etc with minimal help from them. I think we should be questioning the use of antidepressants in cfs/me unless there is secondary depression from me/cfs.

Why are dr's frowned upon for prescribing arvs for cfs when other drs prescribe anti-d's for cfs without depression.

as for expensive treatments lke gcmaf and ampligen etc, its only the rich and famous that can afford them or those who are desperate and mortgage their houses and get in great debt. Most people with cfs cant work so have no hope in hell of affording alot of these treatments even arv's.

The health system isnt about health but about making money and ego's.

heap....my big concern is that the hiv advocates will somehow make drug companies ask for an HIV diagnosis before they supply a patient with free ARV's, which is not the case now.

Ammunition?

This is not a mandatory poll by any means. We at Cure Talk simply felt that Mr. James did not have hard numbers regarding a very specific situation and wanted patients to have the opportunity to give us more information if they were comfortable doing so. As stated, the poll is set up to allow people to be anonymous.

Interview with Michael Snyderman coming soon

Thank you to everyone who took the time to answer our poll. The article can be found on Cure Talk.

The article was a follow up to "Should Clinical Trials Remain on the Table in ME/CFS."

Daffodil do they use HIV drugs for HTLV-1? If so how could they only allow HIV users to be the valid ones to take this drug?

Kate,

I wanted to select two options but could only chose one? I wanted to select the current treatment I am on and then my thoughts on ARV's.

I apologize that you were not able to select two options. I did set the poll up that way when creating the poll, but since I am not a computer expert I don't know why it will not allow you to do that.

Gary,

Thanks for mentioning HTLV - currently no drug is approved to treat it, and mixed results have occurred during clinical trials using the various approved anti-HIV enzyme drugs (i.e. integrase inhibitors, protease inhibitors, reverse transcriptase inhibitors) for HTLV patients. Because the drug pipeline is hot for HIV and treatment for HTLV is essentially a non-existent joke, we have to hope that someday soon a new HIV drug appears that is also effective against HTLV. Otherwise, people with HTLV will just suffer and die; just ask any doctor about HTLV, but be prepared for major apathy.

Best wishes.