Nature: A reboot for chronic fatigue syndrome research

Wonko said:
@Sunshine3

2 years can be a long time, if you're eagerly waiting for something, if you're not, it's just things not happening. Which isn't great, but it's a lot better, and passes a lot faster, than being in a constant state of anticipation.

ETA - It's best, IMO, just to take things as they come, each hour, day, week, month, year or even decade, as it comes, take what good you can from it and forget the rest. Although at times it feels like there is no time, despite there being nothing but, there isn't enough to waste on bitterness.

(Which isn't to say that a certain amount of griping/moaning and general grumpiness isn't perfectly healthy, everyone needs a release valve :hug:)
Click to expand...
Gosh Wonko I wish I had your zen approach but in probability the more affected one is, the more one clings to research.
 
Sunshine3 said:
Gosh Wonko I wish I had your zen approach but in probability the more affected one is, the more one clings to research.
Click to expand...

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.
 
Sunshine3 said:
Good article but timelines at the end are not pleasant to read....more funding needed and a bigger sense of urgency. I am sick for nearly 2 years but that makes me feel like, it's not a huge deal in this community as some are sick for decades with no help so it feels a bit bratty to moan at the two year mark. There is something wrong there. The whole situation for ME patients is outrageous.
Click to expand...

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.
 
Jonathan Edwards said:
The deduction is a bit strongly worded but I tend to agree it is likely to be correct.
Click to expand...
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?
 
Sunshine3 said:
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?
Click to expand...

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.
 
Jonathan Edwards said:
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.
Click to expand...
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." :banghead:
 
Sunshine3 said:
Good article but timelines at the end are not pleasant to read....more funding needed and a bigger sense of urgency. I am sick for nearly 2 years but that makes me feel like, it's not a huge deal in this community as some are sick for decades with no help so it feels a bit bratty to moan at the two year mark. There is something wrong there. The whole situation for ME patients is outrageous.
Click to expand...
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.
 
Invisible Woman said:
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.
Click to expand...
yes, but let us not discount those who have ended their lives because the suffering on every level is just beyond compare
 
Perrier said:
yes, but let us not discount those who have ended their lives because the suffering on every level is just beyond compare
Click to expand...

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.
 
Forbin said:
I've also always wondered if the XMRV paper didn't ultimately shake things up in our favor, too. It should have been a wake-up call to the NIH and the CDC that some outside group might just come along and "eat their lunch" by making a major discovery about ME/CFS, leaving them to answer questions like, "Well, what have you been doing for the past 30 years?" "Uh, calling people in Wichita?"
Click to expand...

Interesting thought, and that last comment made me laugh out loud. Thanks for that!
 
You must log in or register to reply here.
Back
Top Bottom