Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

[Clio]

Shame. Is there another example of something entirely legal (in multiple countries in fact with more legalizing it over time) that is forbidden to talk about on a societal level like this?

I feel like every platform forbids this, but that does nothing to prevent the entirely valid feelings people have about their situation, which just pushes people away from the mainstream into more dark and obscure places.

It also erases the very real problems that need to be talked about, if every single ME/CFS MAID was front and center in people's faces I feel like we would be much closer to a solution for all of us. But instead all of the suffering gets pushed aside, away from view, hiden and othered.

 

[Trish]

In case anyone is unsure of our forum rules on this, Rule 5 d plus the additional note should help.

Spoiler: S4ME rule about discussing suicide

d) Members may not describe or discuss their own or another person’s plans for ending their own life. Members may not describe or discuss methods for ending one's life or link to information about such methods. However, members are free to seek emotional support by sharing their thoughts and feelings about ending their lives, and may discuss the topic in general terms.
Help with dealing with suicidal thoughts here

 

[Axel]

New rule announcement post over at r/cfs:

"We allowed these posts in the past as it was maybe one a month, now it’s multiple per day"

It is the decent thing to do. It is important to be aware of the seriousness of the situation, but there are limits to the support ill persons can give.
There are also other compliance with Reddit’s general rules.

But in some ways, it is to proper journalism to now take over, or an independent forum could collects testimonies and goodbye letters. There must surely be some solution to ensure that patients are no longer on the front line, without leaving those who are passing away to face their final moments alone.
(civilisation ?)

 

[neurophusion]

r/cfs "Rule Update: We are no longer allowing MAID/assisted or planned dying/goodbye posts"

A few weeks ago, a moderator of 'rival' sub-Reddit r/cfsrecovery, posted a diatribe about how r/cfs "is evil and a death cult" because it is skeptical towards brain retraining and allowed discussion of suicide.

The original post has been deleted but some comments remain on that thread.

I wonder how much that had to do with the recent development?

 

[Sean]

Difficult issue, with pros and cons either way. But I understand why they made this policy.

 

[SNT Gatchaman]

"I have referred you to both the endocrinology team initially and then the rheumatology team. They have advised that chronic fatigue syndrome. It comes under the remit of the mental health team. Please contact us if you would like me to refer you to them."

 

[SNT Gatchaman]

Trying to explain severe ME and PEM to the ER nurse:

I wanted to shout: can you physically jump out of the window? You can. Why don't you? Because of the consequences!!! There, that is PEM explained for a 5 year old.

 

[Lou B Lou]

Trying to explain severe ME and PEM to the ER nurse:

Quote: -
"Well, they weren't taught it at medical school." Sorry, but that's just not good enough. There should be a one-page protocol on the wall in every ER:

• Minimize light and noise.
• Minimize time upright.
• Avoid unnecessary exertion.
• Understand that deterioration can be delayed and long-lasting.

That's not asking for cutting-edge medicine. That's asking for basic awareness.'
.

 

[Hutan]

• Minimize light and noise.
• Minimize time upright.
• Avoid unnecessary exertion.
• Understand that deterioration can be delayed and long-lasting.

One thing is that those points actually apply to lots of people needing help in ER. Attention to them would help many more people than just people with ME/CFS have a better experience, and probably contribute to better health outcomes.

 

[Sean]

While it should be done as far as practical, minimising light and noise in an ER is difficult. They are frequently noisy and full of activity, often rushed and somewhat chaotic, and staff really do need good lighting to do their work.

It is a more practical possibility on wards, but even there there are limits, especially if you are sharing room with other patients, which is the normal situation in most public hospitals

There are going to be limits to what can be reasonably done, that patients are just going to have to tolerate as best we can, especially short-term.

Though I do think that the waiting rooms should at least have a quiet, low light area. Good seating would also be a big help, not the hard flat back-breaking plastic planks more suitable for stacking bricks that they have at my local hospital ER. Maybe also a few places to lie down.

 

[rvallee]

One thing is that those points actually apply to lots of people needing help in ER. Attention to them would help many more people than just people with ME/CFS have a better experience, and probably contribute to better health outcomes.

I don't know if it's entirely accidental, though it seems very far-fetched, but everything about how clinics, ERs and generally health care facilities where people wait are designed is that there is a, conscious or not, imperative to make it as unwelcoming as possible. Everything is hard surfaces, uncomfortable chairs, loud noises, the smells, the chaos. They're acting like ground spikes on areas where homeless people could sleep.

If it's not deliberate, well it's one hell of a coincidence that it just happens to always align this way, by pure accident I'm sure. There is not enough health care for everyone, and this creates a self-triage, where it has to be worth it for people to stick around. It used to be that people had to line up in person, often earlier than 6 am, hours before the clinic opened, just to get an emergency appointment at a local clinic. There seems to be an ingrained idea, now so embedded in the industry that it goes entirely unquestioned, that it has to be as unpleasant as possible, because it's not a place to just hang out and chill.

Hence the complete lack of accommodations for sick people. In places that are all about sick people. Truly one of the weirdest examples of crab-in-a-bucket mentality. And it isn't just for patients, frankly. I look at the conditions health care workers face, and it's so damn dreadful it makes white collar cubicles in a normal office look downright luxurious. It's as if the whole thing is built with misery in mind, with getting people in and out as quickly, and ideally as few of them as possible.

Maybe it's no longer an actual goal, and it's just that the tradition goes on unquestioned, but it doesn't matter much when the outcome is the same. It's likely simply a function of a completely inelastic service, where there just isn't any option, so people will suck up anything because they don't have a choice. It certainly fits how such services are typically designed and function, when it just doesn't matter if people are satisfied with either outcomes or experience, they have nowhere else to go anyway.

 

[Chandelier]

Discussion on r/cfs:

It's been about a year since the DecodeME study. What actually came out of it?​

Has it led to any meaningful progress? Better research priorities? New funding? Changes in clinical practice? Anything that's likely to improve our lives in the near future?

From a patient perspective, it feels like the results just stayed within the online ME community and didn't really translate into action. My GP has never heard of it. I'm guessing yours either?

I know the next step is a more in-depth genetic sequencing study, which sounds promising. But I'm wondering... is the same thing going to happen again? Will we get another valuable dataset that ultimately doesn't change anything for patients?

Please prove me wrong. I'd love to hear from anyone who's been following the project more closely. Have I missed any important developments?

 

[Peter T]

“From a patient perspective, it feels like the results just stayed within the online ME community and didn't really translate into action. My GP has never heard of it. I'm guessing yours either?”

Somewhat surprisingly the doctor’s assistant at my GP practice had heard of DecodeME and had a reasonable understanding of its conclusions. I have not seen my actual GP since the results have been published. However, yes I agree we still are a way off clear models of ME or consequent drug trials.

 

[SugarSquared]

Discussion on r/cfs:

Thanks for posting that because I just wrote a comment

 

[BrightCandle]

“From a patient perspective, it feels like the results just stayed within the online ME community and didn't really translate into action. My GP has never heard of it. I'm guessing yours either?”

Somewhat surprisingly the doctor’s assistant at my GP practice had heard of DecodeME and had a reasonable understanding of its conclusions. I have not seen my actual GP since the results have been published. However, yes I agree we still are a way off clear models of ME or consequent drug trials.

My GP hasn't and as the years have rolled on since the beginning of the pandemic they have hardened against recognising ME/CFS and Long Covid. Was a small window there where they at least lied about diagnosing me and I proved they hadn't once I pulled my records and now they wont even utter the words. NICE nor DecodeME has changed a thing about the amount of abuse I get from my GP and SequenceME is unlikely to either.

The issue with translating the genetics into action is one of funding, government will (partially) fund the genetics work but nothing else, so it goes no where to no one to carry out unknown testing on potential treatments that government has never funded. The message of DecodeME fell on deaf ears at the Charite conference, they continue to pursue auto antibodies despite a string of failed trials. Who else is there to really heed its findings? Most of what is funded in the world is still CBT/GET/BrainTraining.

 

[MrMagoo]

While it should be done as far as practical, minimising light and noise in an ER is difficult. They are frequently noisy and full of activity, often rushed and somewhat chaotic, and staff really do need good lighting to do their work.

It is a more practical possibility on wards, but even there there are limits, especially if you are sharing room with other patients, which is the normal situation in most public hospitals

There are going to be limits to what can be reasonably done, that patients are just going to have to tolerate as best we can, especially short-term.

Though I do think that the waiting rooms should at least have a quiet, low light area. Good seating would also be a big help, not the hard flat back-breaking plastic planks more suitable for stacking bricks that they have at my local hospital ER. Maybe also a few places to lie down.

You can’t have comfortable waiting areas otherwise people will hang around in them.

 

[PageofME]

Discussion on r/cfs:

I believe GPs generally don't have time to stay up-to-date on ME/CFS research unless they attend formal training led by a specialist. Because of this, I think it's crucial for patients to find a GP who has actually completed training on diagnosing and managing ME/CFS. Beyond that, a good GP should be willing to skim through research studies you send ahead of appointments to support your case for off-label trials.

My own GP immediately signed up for ME/CFS training as soon as I raised the suspicion that I might have it, and she has reviewed everything I've sent her over the years. Three months ago, she was finally convinced that herpes plays a real role in ME/CFS. Fortunately, doctors in Switzerland look to the US for guidance rather than relying on the UK or EU.

 

[Jonathan Edwards]

I can't get logged in to reddit but would rely s follows:

I see DecodeME as having totally transformed the ME/CFS research field. Previously we had an endless sea of conflicting and probably negative data, most of which was probably irrelevant and related to misconceptions about what the disease might involve. Now we have a clear signal as to what sort of pathways are critical to ME/CFS and they are neural. The tissue expression plots for the genes are stark. The immune system may well be involved too, with the link to BTN2A1, but probably not adaptive immunity in terms of antibodies or specific T cells (which link to HLA genes).

I am aware of at least one genetic manipulation study exploring one of these genes further - at UCL. I would not be surprised if there were others in the pipeline. There are studies in ME/CFS and Long Covid looking at the genetics of the female predominance. As Chris Ponting pointed out, DecodeME should not be viewed in isolation. It is part of a range of studies all shifting the field towards identifiable leads.

 

[SugarSquared]

I can't get logged in to reddit but would rely s follows:

I see DecodeME as having totally transformed the ME/CFS research field. Previously we had an endless sea of conflicting and probably negative data, most of which was probably irrelevant and related to misconceptions about what the disease might involve. Now we have a clear signal as to what sort of pathways are critical to ME/CFS and they are neural. The tissue expression plots for the genes are stark. The immune system may well be involved too, with the link to BTN2A1, but probably not adaptive immunity in terms of antibodies or specific T cells (which link to HLA genes).

I am aware of at least one genetic manipulation study exploring one of these genes further - at UCL. I would not be surprised if there were others in the pipeline. There are studies in ME/CFS and Long Covid looking at the genetics of the female predominance. As Chris Ponting pointed out, DecodeME should not be viewed in isolation. It is part of a range of studies all shifting the field towards identifiable leads.

Would you like me to copy paste this as an answer saying it’s from you and a link to your post as proof?

 

[Jonathan Edwards]

Who else is there to really heed its findings?

Lots of people. My networking is limited for various reasons but so far I have tried two groups - one is now doing a gene function study on CA10 and the other had already just got a grant to work on Long Covid and was very much aware of DecodeME. It would be good to get BTN researchers in Cambridge involved but I don't have time personally at present. The problem isn't really money. It is getting people engaged with the scientific questions. Very often you do't get to hear about new projects until they report results.