CROI: XMRV Easily Grows in Lymph Tissue/Does not replicate/no Immune effects

[free at last]

Hi everyone. I just want to make a point on the scientific process. We have a tendency to be critical of people who are either pro- or anti- XMRV in a particular post. Whichever camp you tend to fall into, the other people are your friends. Robust science requires that everything be challenged and questioned if it can be. You can't trust unchallenged science. After another several years of challenges, XMRV hypotheses about ME/CFS could be filed in the bottom draw or be leading toward a real cure for us.

So, with a nod to Benjamin Franklin, the critics are are friends. Well challenged science that holds up over years is the only science we can even begin to trust.

There is no us and them. There is only us: ME/CFS patients (and allied disorders of course).

Bye
Alex

I so agree with all of this, but passions run very high in both camps dont they, those passions can often end up being distractions, or worse lead to mistakes, or things being done in a biased manner to get the result that particular side is looking for, which backs up there heated passion. In preferance to equal measure ( scientists can suffer from this problem make no mistake) And when scientists suffer from this too, Alex we are all in trouble.

Most, like us to belive, that all scientists are completely neutral in all things scientific. I say no, we all human, with careers at stake, and opinions, and egos, wanting to be viewed by our peers in a particular way.

Its a problem that is very difficult to get around, i belive this problem affects research ( both, types of research ) and even the way the research is carried out on occassion.

Its a worrying problem Alex, and all we really need to do is remind ourselves of what you are saying. To be as neutral as is possible. Patients can try ( this its often very difficult for most, including me) But sadly we have no control over scientists who do not stick to this neutral protocol. And it worrys me the most, look at the rubbish switzer and Stoye said recently is a case in point. Its worse than we think Alex, i really sadly think it is ? But one thing i have noticed is, you lead by example, And you are likely one of the most neutral posters on this forum, So bravo for practising what you preach. If only you was in control of the science, or people just like you. then im sure we wouldnt be in such a mess as we are now, it verges on hatred now doesnt it. The likes of stoye are not helping

 

[alex3619]

Hi free at last, I thank you for your kind words. Yes, passions are high. In some ways this is a good thing - we need advocacy now more than ever. Anyone putting their anger or frustration into advocacy instead of aiming it at each other will do far better by themselves and everyone in the long run.

I am not a saint, I have come close to losing my temper several times recently, on ME/CFS issues. What I try to do is focus it on advocacy. They can knock us down, they can keep us down (for a time) but they can't stop us from getting back up again and putting our anger into effective advocacy, which has its part in what will bring down the attitudes and practices that have led to our predicament.

Anger and rage give us drive, we should use that. Rational thought can give us direction. Find the biggest problems, join with others to find a way to deal with it, and then act. I don't want to push anyone into relapse though - this is an endurance event, and our endurance is poor. We need to spend our strength where it will do the most good.

I will have more to say about how I plan to act in the near future. I have stopped writing my four articles/blogs temporarily because their might be a better way, and I am thinking about it.

Bye
Alex