Brain cells

Yeah I'm starting to get really stressed out about the whole brain only thing. Yes maybe we can guess what erroneous signalling might be going on and fix it with neurotransmitter drugs. But it's nowhere near as well understood as the immune system. And that's very daunting.

I also feel like the people pushing brain only atm are ignoring BTN2A1 and OMLF4 when they confidently state there is no genetic evidence of immune involvement. And I don't understand why. I know that GWAS doesn't point directly to genes etc but BTN2A1 has come up in another study. I feel like there should be lots of people looking into BTN and the possible OMLF4-interferon link and everything just seems so laser focussed on brain.

Obviously brain is involved, it has to be. But as was mentioned earlier in this thread many people have symptoms of ongoing immune involvement.

I want us to look at brain and follow that where it leads. We need to do that. But I feel like we've got new smart people interested in the brain/nervous system side which is amazing, but where are the BTN geneticists and gamma delta T cell people? Where is the funding to look into interferon?

Things feel a little unbalanced to me in that sense. This isn't meant as a criticism of anybody, just expressing my feelings and concerns.
 
From what I can gather we (you guys) are searching for all the steps that make ME/CFS what it is with PEM. We need to zero in on what may give us leads to these steps so we can build the picture. In those steps will be most likely be immune, metabolic steps as well as the neuro side. It is a matter of chewing over these things in depth to see if we can get some of these steps and build on them. Working out how they all fit with each other.
 
V.R.T. said:
I want us to look at brain and follow that where it leads. We need to do that. But I feel like we've got new smart people interested in the brain/nervous system side which is amazing, but where are the BTN geneticists and gamma delta T cell people? Where is the funding to look into interferon?

Things feel a little unbalanced to me in that sense. This isn't meant as a criticism of anybody, just expressing my feelings and concerns.
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These things just came out less than 2 weeks ago, people are just chewing through new data. I don’t think anyone’s giving up any other leads. We’re watching this evolve in real time. Heck three weeks ago we were all discussing the gamma delta T-cells, with new leads comes new discussion! Nothings dropped it’s just not a brand spanking new discovery so there isn’t activity on it.

Watching the forum daily might feel this way but if you zoom out to a months perspective things aren’t lost or forgotten.
 
Jonathan Edwards said:
I would discourage people with ME/CFS from being part of an 'ME' community because ME communities are built around a seriously misleading folklore full of MEMEMEME memes, so to speak. Stuff about neuroinflammation and MCAs and mitochondria and precious little to do with ME/CFS. I am all in favour of them joining a community where people are empathetic, critical, insightful, humorous and not pushing a line, like the members here.
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I'm incredibly grateful to the wider ME community. If it wasn't for them I'd still be pushing my limits, paid thousands for brain-training courses, persisted with CBT and continued exercising even though I was deteriorating from doing so. ME communities are not at fault for wanting answers where none are to be found and end up filling that void with bad science. Scientists should be holding other scientists to account - not people who's social interactions are so egregiously limited that all they can do to find community is via online support or interest groups.
 
BrokenBeaktheBrave said:
ME communities are not at fault for wanting answers where none are to be found and end up filling that void with bad science.
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I disagree there. As I have said before, I think the dictum 'first do no harm' applies to the lay community as much as professionals. The few physicians who wanted to hold the BPS crowd to account twenty years ago got nowhere in large part because their own science was just as bad.


BrokenBeaktheBrave said:
Scientists should be holding other scientists to account
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Things are not so simple. Scientists do not have any obligation to hold other scientists to account in fact. Scientists scrabble together money to keep their jobs and work on whatever someone is prepared to pay them to do. There is no public policy on good science or fair science. It is a dog eat dog business because that is the present day approach to all aspects of life. If you criticise other scientists you get no funding - as I know all too well. I was debarred from grant boards for years because I spoke my mind. I have vociferously held the BPS people to account in my retirement only because I have a reasonable pension. Saying that it is scientists responsibility to ensure quality control is a bit like saying Frans Hals should have said how awful Rubens pictures were.


We are all in this together!!
 
My experiences with psychiatry and psychology have been consistently disappointing and bad, so I don't think I'll ever seek treatment from them. I can't believe in them or overlook the problems.

If the brain disorder findings hold up and society decides ME/CFS patients should be cared for not by neurologists but by psychiatrists, that would be unfortunate.

In my experience neurologists seem to have an easier time understanding ME/CFS and treating patients with respect. Maybe ME/CFS is closer to neurological disorders than psychiatric ones. Maybe it is because neurologists are trained to view patients as victims of an uncontrollable illness, so compassion and respect come more easily and blame is seen as pointless.
 
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BrokenBeaktheBrave said:
I'm incredibly grateful to the wider ME community. If it wasn't for them I'd still be pushing my limits, paid thousands for brain-training courses, persisted with CBT and continued exercising even though I was deteriorating from doing so. ME communities are not at fault for wanting answers where none are to be found and end up filling that void with bad science. Scientists should be holding other scientists to account - not people who's social interactions are so egregiously limited that all they can do to find community is via online support or interest groups.
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Yes precicely. Not engaging with the MECFS community online for a couple of years after I began to suspect 'CFS' is the reason I'm severe. The wider MECFS community may get some things wrong regarding the state of the science but its generally stuff they've read in scientific papers that aren't of great quality. The idea that scientists have no obligation to hold the people doing bad science to account but patients with no scientific training whatsoever should be able to understand and robustly critique scientific papers is absurd.

I do get frustrated with the people who are convinced there is all of this proof that there isn't, but they are literally listening to scientists and doctors who they trust tell them there is all of this proof, and that x or y treatments work for some people. Blaming the patients is really not the way to go here.

There is a black hole where a body of solid research and safe care that should have built up over the last 35 years should be. That is the reason for this situation.
 
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ChronicallyOverIt said:
Watching the forum daily might feel this way but if you zoom out to a months perspective things aren’t lost or forgotten.
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This is probably true, thank you.

ChronicallyOverIt said:
I don’t think anyone’s giving up any other leads
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I have seen quite a few people recently state there is no genetic evidence of immune involvement, and that concerns me because whilst the tissue expression was all brain, there were at least two identified SNPs likely pointing to immune genes, one of which has been clarified/replicated in another paper.

Part of my post was a frustration that we don't seem to have the same kind of fresh talent looking at e.g. the BTN side of things as say the CA10 side. And I think that would be really valuble.
 
Jonathan Edwards said:
I disagree there. As I have said before, I think the dictum 'first do no harm' applies to the lay community as much as professionals.
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And many many do. There's hundreds - probably thousands - of ME groups so they can't be viewed as one entity. Obviously not all ME groups are alike and as you pointed out s4me is a lovely place but the pace, content and tone doesn't suit everyone and I'm sure their absence here benefits you all too.

Also, respectfully, you're not a patient so it's not your place to be judging how ME patients find support and community whilst being isolated in our bedrooms. It doesn't take much empathy to see that very sick people are doing the best they can with the scraps they've got to work with.
Jonathan Edwards said:
Things are not so simple. Scientists do not have any obligation to hold other scientists to account in fact. Scientists scrabble together money to keep their jobs and work on whatever someone is prepared to pay them to do. There is no public policy on good science or fair science. It is a dog eat dog business because that is the present day approach to all aspects of life. If you criticise other scientists you get no funding - as I know all too well. I was debarred from grant boards for years because I spoke my mind. I have vociferously held the BPS people to account in my retirement only because I have a reasonable pension. Saying that it is scientists responsibility to ensure quality control is a bit like saying Frans Hals should have said how awful Rubens pictures were.
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I understand why some (most) don't hold others to account which makes me even more grateful to the ones who publically challenge each other openly and respectfully and especially for the ones (usually the same ones) who push back on the BPS crew.
 
V.R.T. said:
Yes precicely. Not engaging with the MECFS community online for a couple of years after I began to suspect 'CFS' is the reason I'm severe. The wider MECFS community may get some things wrong regarding the state of the science but its generally stuff they've read in scientific papers that aren't of great quality. The idea that scientists have no obligation to hold the people doing bad science to account but patients with no scientific training whatsoever should be able to understand and robustly critique scientific papers is absurd.

I do get frustrated with the people who are convinced there is all of this proof that there isn't, but they are literally listening to scientists and doctors who they trust tell them there is all of this proof, and that x or y treatments work for some people. Blaming the patients is really not the way to go here.

There is a black hole where a body of solid research and safe care that should have built up over the last 35 years should be. That is the reason for this situation.
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I wish I was articulate and thoughful as you. This comment and your #101 comment above are exactly what I'm thinking and feeling and I appreciate that you're expressing your concerns and thoughts are I know many are feeling similarly.
 
AliceLily said:
From what I can gather we (you guys) are searching for all the steps that make ME/CFS what it is with PEM. We need to zero in on what may give us leads to these steps so we can build the picture. In those steps will be most likely be immune, metabolic steps as well as the neuro side. It is a matter of chewing over these things in depth to see if we can get some of these steps and build on them. Working out how they all fit with each other.
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This is so helpful. Thanks AliceLily - I've saved this comment too.
 
V.R.T. said:
Obviously brain is involved, it has to be. But as was mentioned earlier in this thread many people have symptoms of ongoing immune involvement.
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This.

The brain is involved, and so too is the immune system.

Trying to unravel our symptom stew can be daunting, but I think I prefer the simpler answer: Our immune system is the chief culprit behind our symptoms - as it is with most diseases.
 
V.R.T. said:
Yes precicely. Not engaging with the MECFS community online for a couple of years after I began to suspect 'CFS' is the reason I'm severe. The wider MECFS community may get some things wrong regarding the state of the science but its generally stuff they've read in scientific papers that aren't of great quality. The idea that scientists have no obligation to hold the people doing bad science to account but patients with no scientific training whatsoever should be able to understand and robustly critique scientific papers is absurd.

I do get frustrated with the people who are convinced there is all of this proof that there isn't, but they are literally listening to scientists and doctors who they trust tell them there is all of this proof, and that x or y treatments work for some people. Blaming the patients is really not the way to go here.
.
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My feeling is that life isn’t fair and things don’t exist or not exist because they are right or wrong. Until the scientific understanding of ME/CFS is better we are basically doomed to have all this nonsensical noise around it.

Meanwhile, there is a choice for patients to participate in online communities where a lot of nonsense is part of the discourse, or maybe just participate here only where at least the quality of conversation and debate is better and there is also the ability to engage with other patients. i occasionally share links to S4ME on Reddit and it’s clear more and more patients are finding their way here. I notice on Reddit a lot of users try to debunk inaccurate information. Way more so than years ago in the PR era when almost 100% of the discourse was low quality. I feel this is the S4ME effect and that this community is really helping to offer a more balanced view of poor science.
 
BrokenBeaktheBrave said:
I wish I was articulate and thoughful as you. This comment and your #101 comment above are exactly what I'm thinking and feeling and I appreciate that you're expressing your concerns and thoughts are I know many are feeling similarly.
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Thanks! I'm glad that what I write here has value for some people. I often feel like maybe I'm not contributing anything useful to that's nice to hear.
 
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