ME/CFS Science Blog article - Immune findings in ME/CFS

[Felis Catus]

It does trouble that it might have shattered people's hope, certainly not my intention.

I see your blog post as a valuable and honest review of the literature, and I admire you for putting effort into it and creating something so good.

If it's anyone's fault, it lies with those who hype weak research and mislead people. I appreciate everyone has different coping mechanisms. I for one prefer the truth.


EDIT: @bscheurle was quicker than me.

 

[NelliePledge]

Me too: apodictically = clearly established or beyond dispute

Me three

 

[V.R.T.]

the research that is most likely to actual help, that offers the best chance of actually understanding the problem and contributing a real solution, is far more likely to help our grandchildren than it is to help anyone suffering today

I am getting really sick of the pessimism that keeps being trotted out over and over again every single time anyone offers the faintest glimmer of hope.

Our grandchildren? We have researchers and clicnians on here most days saying that there is hope for a breakthrough soon and it's met with this endless doomerism.

This is a disease where many people suffering are completely suicidal with despair. Telling people that there is no hope that there will be help in their lifetime is as dangerous as giving them false hope.

 

[DHagen]

I am getting really sick of the pessimism that keeps being trotted out over and over again every single time anyone offers the faintest glimmer of hope.

Our grandchildren? We have researchers and clicnians on here most days saying that there is hope for a breakthrough soon and it's met with this endless doomerism.

This is a disease where many people suffering are completely suicidal with despair. Telling people that there is no hope that there will be help in their lifetime is as dangerous as giving them false hope.

I did not mean to state that there is no hope. I certainly have no authority to establish such a position for anyone. I am one of those people who is often suicidal. I often feel frustration with the expectation that I keep my pessimism to myself or that I refrain from stating what I feel is a realistic position. I do my best to maintain hope, and with luck, my fears will be proven thoroughly, embarrassingly wrong. All of this said, I appreciate that their expression has the potential to do harm, so I will delete the post and will do my best to shut up in the future. My sincere apologies for any hurt caused, and I mean that.

 

[V.R.T.]

I did not mean to state that there is no hope. I certainly have no authority to establish such a position. I am one of those people who is often suicidal. I often feel frustration with the expectation that I keep my pessimism to myself or to state what I feel is a realistic position. I do my best to maintain hope, and with luck, I shall be proven thoroughly, embarrassingly wrong. All of this said, I appreciate that its expression has the potential to do harm, so I will delete the post and will do my best to shut up in the future. My sincere apologies for any hurt caused, and I mean that.

No need to apologise (or to have deleted it), I got a bit worked up and maybe posted on the attack. I understand that your fear and pessimism is genuinely felt. I was a very pessimistic person before this and in many ways still am so perhaps I find it harder than most to ignore statements like those you often make. So I end up debating with people who make them, so they make more of them which makes me feel even more despairing...rationally speaking I am fairly hopeful, but I get the fears nagging at me every day still. Anyway I wasn't talking only about your posts and I didn't intend it as an attack on you personally or anything.

I hope you are proven thoroughly wrong too but if so it will not be a cause for embarrassment on your part but celebration!

 

[DHagen]

No need to apologise (or to have deleted it), I got a bit worked up and maybe posted on the attack. I understand that your fear and pessimism is genuinely felt. I was a very pessimistic person before this and in many ways still am so perhaps I find it harder than most to ignore statements like those you often make. So I end up debating with people who make them, so they make more of them which makes me feel even more despairing...rationally speaking I am fairly hopeful, but I get the fears nagging at me every day still. Anyway I wasn't talking only about your posts and I didn't intend it as an attack on you personally or anything.

I hope you are proven thoroughly wrong too but if so it will not be a cause for embarrassment on your part but celebration!

Thank you for your comments. I appreciate your pushing back on my initial post and your comments here. I did not delete the post in an offended huff, but rather after your response led me to reconsider what it actually contributed to the discussion. I let a little frustration creep into my response and am sorry for that, I think deleting it was the right thing to do.

I will also be the first to admit that my pessimism is at least as much a defensive strategy as it is anything resembling a rational appraisal of the situation. Even independent of our current circumstances, I am sure everyone here has different means of dealing with our situations and what is to come - it is a sad but probably unavoidable thing that our methods sometimes conflict and risk agitating or even harming others. I certainly want to do everything I can to avoid that if possible.

Thank you again. Here's hoping we can both be celebrating sooner rather than later.

 

[ScoutB]

I often feel frustration with the expectation that I keep my pessimism to myself or that I refrain from stating what I feel is a realistic position.

I think it's normal, in really bad situations, to sometimes just want to be able to describe exactly what is wrong, or what you fear is wrong, and just be heard at least. Maybe a "DHagen vent thread" is a solution? Then folks could choose to read it or not. Though you'd probably have to put a big disclaimer at the top that you just want to be heard, not argued with, we are an opinionated lot...

 

[Hutan]

I'm looking forward to reading this @ME/CFS Science Blog. It sounds as though it is a terrific resource, very useful. I plan to mention it in a meeting later today.

As “not a scientist” I’ve reduced this down to “it’s not inflammation” for the “not a scientist yet feel qualified to opine on my illness” people in my life.

I guess as usual, the reality is a bit more nuanced e.g. 'it's probably not inflammation, and even if it is, it depends on how you define 'inflammation' and where in the body and when in the disease process it occurs'.

Same thing here. One study I've seen mentions 100x spike after a maximal exertion on stationary bike. But it's pretty conclusive at this point that there is no difference in cytokine levels between the cases and controls. The difference in the sensitivity (to tiny spikes after minimal exertion), however, could explain the different response to minimal exertion.

The fact that we haven't found reliable cytokine signals detectable in the blood doesn't mean that there aren't some cytokines acting on a really local scale, for example right next to a neuron. It's the old story of the drunk person looking for his keys under the lamp post. the endless studies looking for cytokines in the blood have been like that.

I did not mean to state that there is no hope. I certainly have no authority to establish such a position for anyone. I am one of those people who is often suicidal. I often feel frustration with the expectation that I keep my pessimism to myself or that I refrain from stating what I feel is a realistic position. I do my best to maintain hope, and with luck, my fears will be proven thoroughly, embarrassingly wrong. All of this said, I appreciate that their expression has the potential to do harm, so I will delete the post and will do my best to shut up in the future. My sincere apologies for any hurt caused, and I mean that.

I thought your post was making an important point, and one I struggle a lot with in advocacy. That is, it is much easier to sell a research programme that promises an imminent cure 'it's inflammation! we have a good plan to fix it!', than to fundraise for more fundamental research. Few people want to hear 'we don't really know much about what is causing ME/CFS right now and we don't have any treatments'; they will ignore people saying that. Instead they will choose to listen to the people in expensive clinics with their menus of drugs or the alternative health practitioner down the road who claims to have cured people.

To make progress, we have to stop being stuck in the ruts of what we think we know. 'It's inflammation!' is definitely one of the ruts.

Thanks again @ME/CFS Science Blog.

 

[MrMagoo]

I'm looking forward to reading this @ME/CFS Science Blog. It sounds as though it is a terrific resource, very useful. I plan to mention it in a meeting later today.


I guess as usual, the reality is a bit more nuanced e.g. 'it's probably not inflammation, and even if it is, it depends on how you define 'inflammation' and where in the body and when in the disease process it occurs'.


The fact that we haven't found reliable cytokine signals detectable in the blood doesn't mean that there aren't some cytokines acting on a really local scale, for example right next to a neuron. It's the old story of the drunk person looking for his keys under the lamp post. the endless studies looking for cytokines in the blood have been like that.


I thought your post was making an important point, and one I struggle a lot with in advocacy. That is, it is much easier to sell a research programme that promises an imminent cure 'it's inflammation! we have a good plan to fix it!', than to fundraise for more fundamental research. Few people want to hear 'we don't really know much about what is causing ME/CFS right now and we don't have any treatments'; they will ignore people saying that. Instead they will choose to listen to the people in expensive clinics with their menus of drugs or the alternative health practitioner down the road who claims to have cured people.

To make progress, we have to stop being stuck in the ruts of what we think we know. 'It's inflammation!' is definitely one of the ruts.

Thanks again @ME/CFS Science Blog.

Listen these people think it’s that type of “inflammation” that you can cure with stretching and lo carb whole foods…you know, the socially constructed inflammation

 

[Sean]

I just wanted to say that, 1. to assume that there must be a detectable and ongoing immune signal in chronic patients under current stratification and 2. to not mention that inflammation might be an important early disease feature that we currently miss due to the six months diagnostic criteria cutoff, might be a missed opportunity that could reinforce current blindspots potentially?

+1

I think if you have shattered hope, you have only shattered ungrounded hope. And although ungrounded hope might help make someone feel better for a bit, it can only coincidentally lead to long term satisfaction (more often than not, it leads to disappointment).

You haven’t shattered any well-placed hope. Your summary isn’t overly pessimistic or anything. You’ve just pointed out that, even if we might be somewhat close to having a good understanding of ME/CFS, we aren’t all the way there yet. That still leaves plenty of room for hope!

The more of my life has been destroyed this disease, the more openly hostile I become to false hope. It is the worst possible response, and both the medical profession and patients need to stop indulging in it.

If there is currently no realistic explanation and effective treatment – and there isn't – then that needs to be openly stated and accepted by all parties, before we can move on to a more realistic response and plan.

 

[duncan]

it has to be a very unusual virus, one that is exceptionally good at hiding itself, causes no obvious tissue damage, leaves no traces in blood or saliva, and induces no systemic immune activation.

) We’re looking for an immune signal that is potent enough to produce extremely debilitating symptoms yet produces no systemic immune activation visible in blood.

Excellent Blog.

I just wanted to throw into the mix a concept that may have some relevance. Immune tolerance, in theory, at least, is a well-established concept, dating back to the 1950's. It's perhaps most familiar in situations involving pregnancies, and I think it received some renewed attention recently as part of the Nobel prize in medicine.

It has nuanced meanings depending on who is wielding it, but one researcher, Finnegan, writes in Sleeper Agent that immune tolerance is "The state of unresponsiveness to a specific antigen or group of antigens to which a person is normally responsive. Immune tolerance is achieved under conditions that suppress the immune reaction and is not just the absence of an immune response"

and

"...early studies of immune tolerance and LCM virus...taught us that a devious infection can be present, actively causing a chronic, slow disease while appearing healthy with no abnormal bloodwork, little to no antibodies or inflammation, but left the victim feeling horrible and incapacitated..."

So, again at least in theory, this may tie back to the observations made about lack of any overt immune signals that might suggest infection or persistence.

 

[DMissa]

For those who are dillusioned by multiple negative findings in an area, I think that you should instead take it as a sign of progress. For those researchers paying attention it indicates what isn't worth pursuing. With enough of that information in hand, the field of possibilities narrows appreciably. That's a win.