Brain cells

[V.R.T.]

there is a choice for patients to participate in online communities where a lot of nonsense is part of the discourse

I just don't see how the average patient is supposed to be able to tell what is 'nonsense' without first spending a lot of time here - which is very challenging for many people as we often see.

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.

I agree with this and it's a real cause for hope that understanding in the community can improve

 

[duncan]

But I'm not sure I agree with this - i think immune system signalling may be causing the brain signalling that causes most of our symptoms.

Immune system signaling is part and parcel of our immune system. This theory presupposes our immune system is in part broken, that the immune signaling switch is stuck in "on" mode, without persistent provocation, and that malfunctioning signaling is in turn causing faulty brain signaling.

Which may be accurate.

Another possible explanation is our immune system is working properly - if "properly" is how you qualify generating a peculiar symptom cluster for a relatively new disease (less than 100 years old)

 

[Jonathan Edwards]

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.

I do appreciate that but you are not a scientist. People do not understand that you find yourself with a job as a scientist and put in grant applications to do what you think is good science and nobody could care a f***. If scientists are supposed to have an obligation to do good sciece and help people then they need to be given the resources and the public needs to be interested enough to make sure the system runs effectively. Since around 1995 biomedical science productivity has nosedived because the system is in a stranglehold of vested interests. And what drives scientists doing rubbish science is the same as drives online patient communities to follow nonsense treatments.

Make no mistake, I am on the patients' side, but I think people have realise that you cannot both assume that you live in a capitalist competitive society and in a utopian socialist one where everyone contributes according to their ability and receives according to their need. Why do people vote for politicians who quite clearly favour the former? It is not that difficult to see that bad science is bad. I can see that for other fields I know nothing about. I can see it for economics and for law. Bad argument and evidence is pretty easy to flush out.

 

[Chandelier]

for a relatively new disease (less than 100 years old)

ME/CFS is most likely as old as humankind.
What is slowly changing is the social acceptance.

History of ME/CFS - Wikipedia

en.wikipedia.org

Timeline​

19th century​

Several descriptions of illness resembling ME/CFS have been reported for at least 200 years.

 

[duncan]

ME/CFS is most likely as old as humankind.

I'm not sure I agree with that.

At the very least, I suspect this is not the same iteration as similar conditions reported in medical annals.

I think our ME/CFS is less than 100 years old.

There is precedent in Lyme disease. Technically, Borrelia has been around for thousands of years. But the Lyme that circulates today is a very different beast than the Lyme that pestered our ancestors.

 

[Axel]

At the same time, this ridiculous cluster of neurons is maybe be the ‘switch’ we’re looking for – the one that some patients describe when certain functions improve or when they cross a threshold from one level of severity to another. Why worry just yet?

A little-studied condition – a little-studied cluster of neurons. For now, it is coherent.

No one, whether a quack or a serious clinician, can come along and say “I knew it”; that is simply untrue.

 

[Jonathan Edwards]

No one, whether a quack or a serious clinician, can come along and say “I knew it”; that is simply untrue.

Indeed, or even if they say "i knew it" in general it is unlikely to lend weight to the old BPS mantra.

 

[Concentric_Spiral]

The only online groups for ME/CFS I participate in are r/CFS and here. I think a lot depends on what you are looking for. It seems to me that many people are just looking for emotional support and understanding from people who can relate to what it's like to have ME/CFS. There is good evidence that peer support of most kinds is beneficial to mental health / wellbeing. Looking for treatment advice from random people on the internet, however, is obviously a terrible idea.

 

[Creekside]

i think immune system signalling may be causing the brain signalling that causes most of our symptoms.

I agree with that, rather than that the malfunction in in the immune system. The brain has the mechanisms for producing ME symptoms without having ME. My first ME symptoms felt indistinguishable from a flu. I think the problem is more likely to be that mechanism triggering on signals that it normally shouldn't, and there's a feedback mechanism that keeps us locked in that state. While in that persistent ME state, normal immune signals can increase the response of that ME-symptom-generating mechanism.

That abnormal response to normal signals needn't be limited to cytokines. Signals from the body, such as "Your gut has these strains of bacteria in it" or "Your muscles have exerted themselves" carried by the vagus nerves might also alter the output of the symptom-generating mechanism. Blood flow, nutrients, hormones, sleep, and activity in different parts of the brain might also affect that mechanism's output or that output's effect on different parts of the brain.

 

[V.R.T.]

My first ME symptoms felt indistinguishable from a flu.

I couldn't understand why I kept getting a heavy cold every single time I had a busy day out.

 

[obeat]

For me the question is what young neurologists and young psychiatrist are thinking. We have genetic studies, brain cells atlas,far more understanding of biological brain and immune processes. Aren't they going to want effective drug treatments?

I've heard a psychiatrist whose speciality is schizophrenia desperate for new drugs.

I am hopeful that we can engage a younger generation with biology. When I graduated in 1986 we had two oncologists for all N Ireland. For the past 20 years we've had a cancer research center with over 400 researchers.

Things can change in a positive direction.

 

[neophyte32]

I couldn't understand why I kept getting a heavy cold every single time I had a busy day out.

Same here... in 2024 I saw three ENT specialists because I had a constant cold with rhinitis. In 2023, I had seven bouts of tonsillitis... but what scares me is that I have memories of having a constant cold from years before... just like the genital warts that keep reappearing. But since I've been bedridden, I haven't had a cold..., those were the PEMs.

 

[MrMagoo]

Unfortunately I don’t think science is “fast” it develops. And social media is really fast. Mainstream media is fast.

Just like the terrible behaviour when the lady Nicola Bulley went missing - people with zero relationship to her or the area or situation were online commenting, hounding her friends and family, accusing neighbours and demanding the police share x y z. Police investigations are not fast and they don’t require a Greek chorus and audience to contribute.

The hubris was she was found a few weeks later in the river - having fallen in. Exactly as the police predicted. But…everyone needed to know faster!

Sometimes you have to just weigh things up and wait it out for more info. Making rebuttals and presumptions of treatments on Reddit as soon as a preprint pops up isn’t going to advance the science, no matter how much people want it to.

 

[Kitty]

And social media is really fast. Mainstream media is fast.

Yup. As fast as it is shallow.

 

[SugarSquared]

For me the question is what young neurologists and young psychiatrist are thinking. We have genetic studies, brain cells atlas,far more understanding of biological brain and immune processes. Aren't they going to want effective drug treatments?

I've heard a psychiatrist whose speciality is schizophrenia desperate for new drugs.

I am hopeful that we can engage a younger generation with biology. When I graduated in 1986 we had two oncologists for all N Ireland. For the past 20 years we've had a cancer research center with over 400 researchers.

Things can change in a positive direction.

I hold a lot of hope in the younger generation of doctors and scientists.

My best experiences at the ER were two younger doctors. I think one was still in residency, and she was the best one I saw. I made sure to write an email to the hospital commending her excellent and compassionate care.

In a Zoom meeting held by the AQEM (Association québécoise de l'encéphalomyélite myalgique), I learnt they're doing education work at medical schools.

I just hope similar things are happening on the research side of things. Sometimes I wish I could show up in a class, point at 5 people, and just tell them they will study ME/CFS now haha. Learning about the researchers on this forum makes me think we're getting more people interested in our disease. I hope that's actually the case.