Is there anything left to try?

General Discussion
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#42

With respect, I honestly don’t think people realise how much work has gone into just the survey:

Planning, researching, checking details and making sure the output data is useful to clinicians, finding a coder, beta testing, publishing and then endlessly reminding people, inviting people to take it, speaking to people from other groups. For the ten or so of us who run this place getting the few hundred results we have from the survey has been like pulling teeth and is an unprecedented effort and achievement for a patient group. Let alone one with our symptoms to deal with.

To then use that data to illustrate our problem to world class scientists and travel across the world to meet them and explain the situation is incredible.

That it didn’t work out is disheartening, but we will build on it.

Take a second to look at that again. The amount of work needed to do things PROPERLY is massive. That’s thousands of hours from a team of people. It’s why no other patient group has done what we’ve done.

Day to day, we write news articles and share them with the medical community, improving our recognition and building our network. Nobody writes those for us. We do that.

We devise our video strategy, endlessly talk about what we want to achieve, promote that to our membership. Nobody stumbled across the idea and had it appear fully formed. That’s hours of Skype planning between people living on different continents.

We devise our 23&Me project. We analyze what we have. It’s too complicated for me to even understand what is happening with that.

We endlessly work on making this community the best that we can, hours are poured into keeping this place respectful and protecting people from scammers who have exploited communities like ours and in some cases have led to significant worsening of people’s situations. This is the best, safest community for someone in our position to sign up to.

That’s what we’re doing, or trying to do.

Anyone reading this thinking that nothing is happening, I offer you the opportunity to be given a job so when someone asks what we’re doing more people can say “this is what we’re doing.” I’m not saying that negatively, I’m just saying that more people could be involved if they want to be.

5 Likes
#43

Then don’t expect any cure in your lifetime for pfs if your plan is to wait for “real science” and thinking filling out a survey will change anything.

The truth is we don’t have anything else than “bro science” that helped a lot of people mind you.

Your plan is sadly a pipe dream, if your plan is just to wait for them to find a magical cure, you will never recover. And in the most positive scenario, a legit cure that will help everyone is more than 10-20 years away if this pace of pfs reseach continues. Mind you I’m not against surveys or legit long term research but let’s be real here, it will take a VERY long time for a solution to come from that side.

The key is to take action if you want to recover, waiting will not.

#44

I do feel the community is at large appreciative of the effort of the admin team - I know I am, but there are a few who think things just happen.

If somebody wanted to get involved, be it myself or somebody else, what kind of admin task are you guys finding to be in the most need of?

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#45

That admins have literally told us that the survey results were so impressive that they piqued the interest of a top European research centre. How can you now say it’s worthless?

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#46

Well, I guess it depends on the timing and the person, if you have any skills that you think could be helpful, we’d take that into consideration. If you’re a graphic designer or a developer then we’d have jobs that could be assigned in those fields. If you’re a carpenter, we’d have different things for you.

Send me a DM if you’d like to get involved. :slight_smile:

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#47

Where did I say that it was worthless? Of course it’s not worthless but it’s not a good strategy to just wait instead of taking action even if it’s “bro science”.

Like I said, the truth is waiting is the worst strategy because a cure coming from “real science” is very, VERY far away.

#48

We’re only waiting because more people haven’t stepped up. If everyone did more, we’d be further down the road.

By discouraging people from embracing a scientifically sound strategy, you push the breakthroughs we want further down the road.

Looks like you haven’t filled out the survey btw.

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#49

You said it won’t change anything which if true would make it worthless. People have gotten dramatically worse from trying to ‘better’ themselves with supplements etc, so relying on the science is the only thing that some people have. Either way, there’s no harm in both contributing to the science and trying to better yourself - however you see fit. Also, if you think that the survey is a good strategy, could you please take it yourself?

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#50

Thanks by the way, it’s much appreciated to hear things like that. We tend to hear more from people who are keen to tell us we’re doing nothing, they could do it better, or an already disproved dangerous course of action is the thing to do and we’re idiots for not embracing it.

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#51

This may well be true, but wouldn’t it best to allow scientists to at least understand the problem at least somewhat before you start throwing ‘the kitchen sink’ at it?

#52

Of course let the scientists do their work but be realistic and don’t put your money on the scientific community to pop out a magical solution in the coming years.

The “kitchen sink” approach is the ONLY approach we have right now. So take action and don’t just wait, that’s all I’m saying.

#53

I’m not telling you not to do anything, but do the things that will yield results as well.

In all seriousness, this is the kind of talk that holds the community back.

The idea that you’ll stumble across a cure through self experimentation, is just so unlikely and so dangerous that you could (and I’m not saying you are doing anything dishonest) find yourself wondering if a drug manufacturer might wish to sabotage a patient group that’s getting somewhere by trying to get them onto the herbs, supplements and weightlifting plan that has failed for more than a decade, but kept people placated and not actually contributing to real research into the condition they are desperate to be freed from.

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#54

Yes and waiting wil not yield any results.

#55

Nobody is talking about waiting. I’m asking for help and for people to join in. I’m saying seize control of your future. Don’t flush it away with a guide on how to raise you dht you found on a website that used words you didn’t understand so it must be an authority.

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#56

Look I hope I’m wrong and you guys are right that the scientific community (who also destroyed us btw) will come out with a cure in the coming years.

After fina my trust in “real science” is very low, sure fill out those surveys but in my humble opinion we need to take matters in our own hands.

Good luck to all whatever path you take.

#57

Taking matters into your own hands is one thing, but why not help out the other team while you’re at it and you can cover both bases? I’m not telling you not to do something, but you seem to be telling people not to help out. You can remedy that by getting a lovely blue tick on your avatar (by completing the survey), doing whatever you’re planning on doing won’t stop you from filling out the survey.

#58

This. We’re not trying to have a dig at you @Peterson, but it doesn’t have to be an ‘either or’ approach. The survey can be done in 40 minutes. You don’t even have to do it all at once. It’s already been confirmed that it’s had profound effects in garnering the interest of researchers. It’d be really cool if you could lend a small hand.

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#59

Bro science hasn’t done anything except screw people up and likely contribute to suicides due to false hopes and associated disappointment and depression over money and time thrown down bottomless pit.

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#60

My issue is that it seems like no one here is contributing a damn thing except the admins. Meanwhile they will actually talk as if they are doing something, talking about “we” this and “we” that, when in point of fact they are only talking about something an admin has done while being so self centered they can’t be bothered to try to get more survey participants or anything else whatsoever.

Just tired of people talking as if this is a community that is making progress. Don’t really see anyone lifting finger to do anything at all except the admins. Meanwhile everyone coasts telling themselves everything is going to be fine because “we” are making progress.

Things are not fine. Thousands are losing all their hopes and dreams out of life while, in the meantime, not a single serious study of our illness has been performed. Can hardly think of a bigger nightmare.

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#61

That’s not true.