...in that circumstance scepticism and civility are the only meaningful guidance for how to conduct a discussion.
Personally, I would say that 'supportiveness', 'kindness', 'sensitivity', 'empathy' and 'thoughtfulness' might also be helpful qualities to bring to a supportive patient forum.
Suicide and 'battling on' are not specific qualities of people affected by M.E/CFS and the implication that one has to acknowledge 'suffering' in order to be entitled to comment on the science relevant to M.E/CFS suggests a deeply unheathy attitude toward contrary perspectives
I disagree, and I actually think the opposite. I think that on a forum such as this, where people do indeed have to 'battle on' and sometimes deal with issues of suicide or suicidal feelings, then it is wise to post sensitively such that a 'logical' comment about an issue of science will not be inappropriate to the reality of people's lives, and cannot be misinterpreted such that it offends people.
So I think it might be helpful to be mindful of people's personal lives when posting comments consisting purely of 'logical reasoning'.
Only a complete fool would engage in advice giving about ARV treatment on an open frum - the only possible advice would be "consult an expert". As to my health status, why would I write about a scientific issue in terms that defines my personal health ? Medical science can rarely be understood in terms of an individual's self perception of their own dysfunctions, which is why objective measures of multiple subjects matched to multiple controls, forms the body of clinical research. In any case the whole 'show me your stigmata and I'll accept you belong' qualification on forums like this is both absurd and obnoxious.
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The subject of this thread is a study titled Biochemical, inhibition and inhibitor resistance studies of xenotropic murine leukemia virus-related virus reverse transcriptase - I don't see where appeals to emotion have relevance. Suicide and 'battling on' are not specific qualities of people affected by M.E/CFS and the implication that one has to acknowledge 'suffering' in order to be entitled to comment on the science relevant to M.E/CFS suggests a deeply unheathy attitude toward contrary perpectives - the kind of attitude that leads to cultistic groupings. This is an Internet forum where the participants are predominantly pseudonymous and none of us can know anything about any other poster beyond what each poster claims, in that circumstance scepticism and civility are the only meaningful guidance for how to conduct a discussion.
IVI
IVI, it is very easy to write in very logical, black and white terms on a subject like this.
But in reality, things are slightly different.
I think that if you took time to consider how your comments might be perceived by someone who has a different perspective to yourself, or less scientific knoweledge than yourself on this specific subject, then all the confusion in the last few posts could have been avoided.
I happen to agree with you on some of the issues you've raised regarding ME patients taking antiretrovirals, even though I am one of the most enthusiastic followers of the XMRV science.
(i.e. there is no clinical proof that antivirals work for ME patients; even the anecdotal evidence is sparse and not yet convincing (in my opinion); there is a lot of research to be done yet; there is the issue of toxicity; and there is the issue of drug resistance both at a personal level and at a universal level.)
But you have failed to explain these issues clearly to the people who you are discussing them with.
If i didn't know about the details of all of these complex issues already, then i would be none the wiser from your posts.
Please remember that most people on these forums are patients and not scientists. So not everyone will have a clear and immediate understanding of the issues that you have raised if you don't explain them fully.
Having said what i've said above, I also fully understand why someone would want to take antiretrovirals.
And, in desperation, I might do so myself.
If I was more ill than I am now, as I have been in the past, and I could not see any quality of life for myself in the future, then i would indeed try anything.
Indeed, when I was first ill, I was feeling desperately ill, and I had no medical support, or medical input at all, other than being told that I just had a respiratory infection, and that I was "catastrophising", by my family doctor. The only thing that I could think could be making me so ill was a tooth where i'd recently had a root filling (I thought it might be an infected root). So I had the healthy (but root-filled) tooth taken out, and still have the gap to show for it. Although I miss my tooth, I would do the same now if i was in the same situation.
So to put it another way, your black and white logic can come across as insensitive to people's real world situations.
It's easy to quote from a text book. But people do not live their lives according to text books.
When people are desparetly ill, they will try things.
No amount of lecturing from you will change that.
You
appear to be accusing people of wrongdoing and to be interfering with people's personal lives. This can be taken personally by the people whose lives you appear to be interfering with.
Maybe that's not what you intend, but if you post insensitively on a patient forum, then it is easy to step on people's feelings and to step on people's lives.
On a support forum like this, rather than a science forum, I think that it is sensible to consider more than the pure science, but how science interacts with the reality of people's lives, and how it
potentially interacts with our lives in a personal capacity.
If I was in a situation where I
believed that antiretrovirals might help me, and I was desperately ill, and deeply in need of support and hope, then I would try the drugs, and I wouldn't care at all about such things as drug resistance.
That might sound selfish or stupid to you, but in times of need, people sometimes need to take calculated risks, or make selfish decisions. And if doctors are prescribing antiretrovirals, then no one has the right to point the finger accusingly at the patients. I don't know if that was your intention, but you do have a certain way of writing that seems to accuse ME patients of all sorts of stuff sometimes.
In such a situation, none of your lecturing would change my opinions. Information might change my mind, but lecturing wouldn't change a thing.
If you don't explain clearly why prematurely taking antiretroviral drugs could potentially affect the world-wide population of ME patients, and affect an individual's chances of long term recovery or cure, then many people will not know. So how about providing people with clear info on the subject, rather than scientific banter?
If you provide the information sensitively, and take into account the reality of people's lives, and avoid lecturing, then I'm sure that you will get a positive and a receptive response, instead of provoking negative responses.
In any case the whole 'show me your stigmata and I'll accept you belong' qualification on forums like this is both absurd and obnoxious.
IVI, I think you are missing the point that was made. The point being made was that maybe you aren't aware of how seriously ill people with ME can be. In which case it might explain why you
appear to have a lack of insight into the reality of people's real-life situations whilst you lecture us all about ethics in science.
ETA: If this post comes across as a lecture, then I should obviously try practising what I preach, but at least I've got a good sense of irony!