It's nice to see so many of the old gang from the early days.Gee, this thread is sort of a reunion party for those who were around here in the early days. Enjoy that!
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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It's nice to see so many of the old gang from the early days.Gee, this thread is sort of a reunion party for those who were around here in the early days. Enjoy that!
As hopefully one of the 'nice, well-intentioned folks' on Science for ME, I wouldn't agree that this is what the Science for ME forum focuses on.And their definition of scientific, is strictly pharmaceutical-based treatments. They dismiss any science that shows a benefit from things like methylcobalamin or any vitamin/mineral that is proven to help say, mitochondrial function -- just as one example.
Don't get me wrong, there are very nice, well-intentioned folks over there, but IMO they seem to automatically negate things that don't fit the drug model. I often thought they should change the name of the site to D4ME.
There's a strike happening at Reddit due to changes for third-party apps, so many subreddits have decided to go "dark". They'll be up and running again tomorrow.This site might see more traffic now due to the issues going on at Reddit, one of the subreddits that I liked to look at for a video game went into private mode yesterday so I can no longer view it. Just checked and the same thing happened at the CFS one.
@Hutan I don't know whether you were around at the time, I doubt it, but what you say is whitewashing the subject somewhat.As hopefully one of the 'nice, well-intentioned folks' on Science for ME, I wouldn't agree that this is what the Science for ME forum focuses on.
One thing we spend a lot of time on there is examining in detail the evidence for psychogenic based hypotheses of ME/CFS (and concluding that the evidence doesn't hold up). That has been very necessary for advocacy, as if CBT and GET really did fix ME/CFS, then there would be no need to try to understand a more biological basis for the disease, or to look for treatments that actually work.
Related to that, we try hard to be a source of support and information for ME/CFS advocates focused on providing evidence-based information. We have members from all over the world, some of whom are valiantly and mostly single-handedly leading advocacy efforts and combatting psychogenic hypotheses in their countries. So, yes, we do have more UK members than PR does, but we have plenty of members from Europe, the US and well beyond. We try to be international in outlook, and have regional threads that can help advocates keep up with what is happening around the world.
Another thing we spend a lot of time on is evaluating research papers that come out that might shed some light on the underlying biology of ME/CFS. And related to that, we try to help members improve their own capacity to do this, because a lot of ME/CFS research is flawed, often very flawed, and should not be taken at face value.
We do also evaluate papers and hypotheses about treatments. These papers too are often extremely flawed. I think our members generally value the scientific process, which starts with observations, including n=1 observations, but doesn't stop there. We try to help our members to be able to knowledgeably advocate for really good quality research. I think that good research is what will bring the most help to the most people most quickly.
I certainly wouldn't characterise our members as being mindless cheerleaders for drugs, or indeed any sort of treatment. You will find threads on diets and supplements as well as drugs. Our members generally try to apply careful analysis to all proposed treatments.
So, let a hundred flowers bloom I say. Perhaps some of the members here will feel more at home at Science for ME than here. Perhaps some of the members here will pop into S4ME occasionally to get a wider variety of views about something, or make use of our resources. And some of the members here won't find S4ME to their taste at all. That's all fine. There's enough jobs to be done around ME/CFS and enough people to be supported in different ways that a single forum can't do it all.
Warm wishes to everyone.
You've pinpointed one of the many things I love about PR ..... while I any may not agree with every alternative treatment discussed, I find them interesting, and when I don;t I do exactly as you've said .... I just quietly move along, unless I have real information about potential damage from them.Some of us had become very annoyed with the reaction of some of the leavers when we tried to discuss experimenting with alternative remedies.
@Hutan ... Our belief was that, if they did not have an interested there, they could have just stayed out of the threads and leave us to discuss the matter. Instead we would be bombarded with questions about 'evidence' . This also followed those who came along to tell us about how they had got rid of their ME with said remedies. We were interested to hear but they just got shut down. One helpful lady in particular, who, not without her faults, told us about hair mineral analysis. I tried to discuss homeopathy and rife devices and that caused an uproar.
You've pinpointed one of the many things I love about PR ..... while I any may not agree with every alternative treatment discussed, I find them interesting, and when I don;t I do exactly as you've said .... I just quietly move along, unless I have real information about potential damage from them.
This is just one of so many things that I hope don't change, this vast arena for everything from deeply science-y posts to anecdotal reports from The Outer Limits, there's a bit of everything here, waiting to be discovered and giving us hope .... and if it isn;t your cuppa, there's vasty alternatives, just waiting around the corner for you to discover them ....
It is a shame though that we lost a lot of the people with a background in science and medicine to S4ME. There used to be some really interesting discussions here at PR before the big fallout involving some of those who defected to S4ME that I miss reading.
I just hope that we can continue to keep these forums a safe, non-judgemental space for people to share their experiences, however weird or alternative those experiences are. Each of us is an n=1 research project.
So yes, sincerely, thank you Cort - the information you make possible is absolutely invaluable to us all.
And thank you from the bottom of my heart, everybody on this forum! You all have no idea how many times you have helped me through the last 5 years of my life since getting ill.
agree !Hi @Tiffyshea -- A 5 Star post if I've ever seen one.
Absolutely right on. Testing out theories on alternative therapies is way to costly for even large manufacturers of, say, IV Vit C, to undertake. And, of course, there's no money in it for BigPharm, which is the deadly blow to any further investigation.But there will never be any "evidence" proving any of these things work for us because there is no money in them.
Totally agree. Anecdotal times 'x' number of positive effects/reactions = DATA.Because honestly anecdotal information is only anecdotal until it reaches a certain number of people's experience, and then it becomes data.
Right there with you ....I just hope that we can continue to keep these forums a safe, non-judgemental space for people to share their experiences, however weird or alternative tho
This forum is a lifeline in so many ways, for sooooo many of us. @Cort created a little miracle here, and is to be deeply thanked for it. As are all the people who kept things going, from the members who post to the incredible efforts of the late-Board and @Janet Dafoe , @Diwi9 , and @Hip and so many others I can;t think of right now, cause ..... not a great day, brain-wise ....And thank you from the bottom of my heart, everybody on this forum! You all have no idea how many times you have helped me through the last 5 years of my life since getting ill.
I should visit over there more....and I like their summaries of What is Going On: the newsletter type thing is very handy.and S4ME
I miss the science-y people more for their ideas on what might be causing certain symptoms or reactions and also for their theories on what might be going on in the brain/immune/nervous systems to cause ME itself, rather than for their treatment ideas.
I agree wholeheartedly, @Sing, and loved your heartfelt and moving comment.... am so glad that you've decided to come back !!!!But the truth I am experiencing today is that I appreciate and value this community, and I need the understanding and relationship I find among you.