Nature: A reboot for chronic fatigue syndrome research

Gosh Wonko I wish I had your zen approach but in probability the more affected one is, the more one clings to research.

 

To be honest, it's more like the longer you are ill, the more you have battled with the the disbelief and denigration, the having hopes raised and then dashed again, the more philosophical you (have to) become. Especially, when you are more affected. It's a coping mechanism.

 

Regarding the timelines, then collectively what do you propose we do about improving them? Are you involved in fundraising, awareness, or research? I am involved in clinical research mainly, and my age is a barrier to most scientific research studies. I attended three ME Millions Missing rallies. I don’t like asking people for money, so I avoid that angle.

 

I don't think there's any evidence supporting the claim that a difference in outlooks exists merely because the other person is less ill.

 

Would you have agreed with this :

 

The deduction is a bit strongly worded but I tend to agree it is likely to be correct.

 

Why then do the Norwegians appear to be having some success with cyclophosphamide, the fact that they have moved onto phase B of the trial indicates that phase A was reasonably successful. Also, ivig helps patients. Does that not also indicate autoimmunity. Maybe this is a very basic question but if inflammation is playing a role in ME, is that not driven by the immune system and a form of autoimmunity?

 

I am afraid it is all much more complicated.

The first problem with the cyclophosphamide trials is that they have to be unblinded because cyclophosphamide makes most people very nauseous. So responses may be placebo effects of one sort or another. The sad irony, as I have mentioned before, is that dedicated humble compassionate physicians like Oystein Fluge, trying to do good research, are likely to have hugely powerful personal placebo effect. The more a physician tries to be honest the more respect they are likely to get together with the positive vibes that go with that.

The same applies to IVIG I think. As far as I remember the most recent blinded studies did not show a useful effect.

And if there is a genuine benefit from cyclophosphamide that need not indicate autoimmunity. Cyclophosphamide kills all sorts of cells, including most sorts of immune cell. A benefit might suggest that ME/CFS was caused by immune dysfunction but autoimmunity is only one of several sorts of immune dysfunction.

Inflammation can be driven by anything toxic to the tissues - bacteria, trauma, loss of blood supply or whatever. Only in a small proportion of cases is it actually caused by a malfunction of the immune response itself. Inflammation is in a sense a part of the immune response, but that may be a perfectly normal response to something fromqoutside. And even if it is due to immune dysfunction there are lots of other sorts apart from autoimmunity, like psoriasis or Crohn's disease.

 

I don't want to question Fluge or his research but the negative outcome of the RituxiNOT trials might actually be helpful in lowering this placebo effect a bit.

 

Great to see Columbia Public Health social media team know what they are talking about.
Their text at time of me posting this is "A must-read for anyone interested in the mystery of chronic fatigue."

 

you are more than correct; the situation is outrageous, and I would add cruel. This population of patients suffers in an extreme way;many if not most endure symptoms around the clock, many are confined to their beds; the whole thing is a nightmare, and it's like a bad dream.

 

yes, but let us not discount those who have ended their lives because the suffering on every level is just beyond compare

 

No. I'm not discounting them at all. I'm simply pointing out that some of us have to develop coping strategies to help prevent us from joining their number. We need hope but pinning too much hope on each potentially useful piece of work, hoping it will be the cure rather than a move forward, can leave some of us open to strong swings of emotion that are exhausting and quite damaging when they happen repeatedly.

I am also pointing out that those who develop such strategies are not necessarily the more mildly affected but are probably the ones who have been living with the condition longer. They've learned strategies because they have to if they want to cope/ survive.

I am severely affected. I consider myself lucky - it could be much worse. However, this does not mean that I think the more mildly affected suffer less - that is not for me to judge. They are out and about in the world and, I would imagine, face ignorance and discrimination directly every day. That is very hard to cope with when, like they rest of us, they are struggling through every task they do.

 

Because the question of how to accept ME and find peace with it has come up in a couple of threads I've started a new one:
https://www.s4me.info/threads/finding-peace-and-acceptance-with-me.1804/

 

Interesting thought, and that last comment made me laugh out loud. Thanks for that!

 

Looking for responses to Nathalie Wright's piece in the Independent, I saw this from Sharpe on the Nature piece:

https://twitter.com/user/status/950687279093346305


He's not angry, he's just very disappointed.

Makes me like this piece even more.

 

Isn't "very disappointed" what people say just before they push the button to turn on the industrial mincing machine?