New Discord Group

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Hi peeps,

I have created a new Discord Group “Solve ME/CFS”

This Discord group differs from others in terms of the classification of the individual channels and the overall approach: While other groups are divided according to active ingredients, the focus here should be on the individual members.

That means: everyone introduces himself with a short medical history AND known laboratory values.

Then in each channel it should only be about which active ingredients helped and which did not.

The idea behind it corresponds to my understanding of ME / CFS: I don't believe in a uniform pathogenesis, but in a diversity of subgroups.

In this respect, I think it is more productive if everyone can read their way through the channels and - ideally - determine their personal subgroup. Then he can try the active ingredients successfully used by this member himself/herself and indicate success or failure as a response with a “thumbs up” or “thumbs down”.

Of course, he*she should also mention his successes and failures in his*her own channel.

IMPORTANT: ONLY users who were and are willing to try active ingredients are welcome in this group. We're not talking about whey, niacin, and similar supplements since there are enough resources about these out there. You are surely welcome to do that in the other Discord groups. Only drugs, peptides and the like apply here.

Furthermore, I expect each individual to treat one another with respect. There are no dumb questions. Not everyone is physically or intellectually capable of fully understanding biochemical and medical relationships. We only win when we all support one another.

Anyone who disregards this will be thrown out without warning. This also applies to experienced usera.

Your Martin a.k.a. paused_me

Ps.: If you are interested please send me a DM
 

Learner1

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Hi peeps,

I have created a new Discord Group “Solve ME/CFS”

This Discord group differs from others in terms of the classification of the individual channels and the overall approach: While other groups are divided according to active ingredients, the focus here should be on the individual members.

That means: everyone introduces himself with a short medical history AND known laboratory values.

Then in each channel it should only be about which active ingredients helped and which did not.

The idea behind it corresponds to my understanding of ME / CFS: I don't believe in a uniform pathogenesis, but in a diversity of subgroups.

In this respect, I think it is more productive if everyone can read their way through the channels and - ideally - determine their personal subgroup. Then he can try the active ingredients successfully used by this member himself/herself and indicate success or failure as a response with a “thumbs up” or “thumbs down”.

Of course, he*she should also mention his successes and failures in his*her own channel.

IMPORTANT: ONLY users who were and are willing to try active ingredients are welcome in this group. We're not talking about whey, niacin, and similar supplements since there are enough resources about these out there. You are surely welcome to do that in the other Discord groups. Only drugs, peptides and the like apply here.

Furthermore, I expect each individual to treat one another with respect. There are no dumb questions. Not everyone is physically or intellectually capable of fully understanding biochemical and medical relationships. We only win when we all support one another.

Anyone who disregards this will be thrown out without warning. This also applies to experienced usera.

Your Martin a.k.a. paused_me

Ps.: If you are interested please send me a DM
I know you have the best of intentions here, but if everyone goes and starts some other discussion group, then patients lose access to one central spot where there's information, and have to monitor multiple conversations in multiple apps/websites.

Nothing you have described is against the rules of this forum, which is where we all met.

Additionally, having used Discord, I find it a much more difficult format to follow. It's difficult to quote and respond.

In short, it's your choice to do this, but I'm not convinced it's a service to this community.
 
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I know you have the best of intentions here, but if everyone goes and starts some other discussion group, then patients lose access to one central spot where there's information, and have to monitor multiple conversations in multiple apps/websites.

Nothing you have described is against the rules of this forum, which is where we all met.

Additionally, having used Discord, I find it a much more difficult format to follow. It's difficult to quote and respond.

In short, it's your choice to do this, but I'm not convinced it's a service to this community.
Thank you for your feedback! You don't have to join, it's an invitation only!
 
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I am very curious to hear people's results, but I don't want to experiment on myself. Do you have an option for this?
Of course. My plan is to start and watch the lab results, symptoms and what helps the individuals... Then when there is sufficient data I want to discuss subgroups here on the board. I want everyone to have access to the information! So @Push Fwd and me moderate the group and when it's time we will hopefully be able to open a thread here to discuss the results.

I know it sounds a bit chaotic but we are willing to do the work.

Perhaps it's naive and will tell us nothing. But I hope for the possibility of a chance so to speak!
 

lenora

Senior Member
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Hello Everyone....There is something similar being done @#MEAction. At the moment they're actively looking for volunteers especially in research, doctors, lawyers, people with long term experience in the illness (and the history, let's not forget that).

They've already had one Zoom meeting about it, are trying to regroup after COVID and Jen Brea used to be an active participant in this group. She was actually present in the last Zoom meeting.

The next is coming up soon, so you may be able to make the connection you want without having to start from the very beginning again. I think you younger ones, most especially, should go for it. Put your minds to good use....you have some ideas that can be used and there is already a large group of people.

Put this under a "just a thought" category....but don't delay if you feel you have something to offer. Yours, L.
 

drob31

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Of course. My plan is to start and watch the lab results, symptoms and what helps the individuals... Then when there is sufficient data I want to discuss subgroups here on the board. I want everyone to have access to the information! So @Push Fwd and me moderate the group and when it's time we will hopefully be able to open a thread here to discuss the results.

I know it sounds a bit chaotic but we are willing to do the work.

Perhaps it's naive and will tell us nothing. But I hope for the possibility of a chance so to speak!
I'm extremely active on discord.
 

lenora

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HI Martin.....I understand the thought behind what you're saying, but I am unwilling to take part in any survey that is done. Reason being: They're not even close to scientfically correct and most are just plain faulty.

If that isn't the case, then how far back are you willing to accept blood test results? In my age group, plenty of people just accept what is and try to complete their lives. Thus, we may not be the folks you're after.

If you're young then I say go for it....however I don't think a lot of people will have the information you're hoping to find. Certain ones, yes, but then maybe you only want/need a small sampling. Yours, Lenora.