Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

[Jody]

Gee, this thread is sort of a reunion party for those who were around here in the early days. Enjoy that!

It's nice to see so many of the old gang from the early days.

 

[Hutan]

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.

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.

 

[Tsukareta]

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.

 

[Osaca]

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.

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.

 

[brenda]

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.

@Hutan I don't know whether you were around at the time, I doubt it, but what you say is whitewashing the subject somewhat.

There had developed a dispute between those who would leave to start S4ME and those of us here who were involved. Some of us had become very annoyed with the reaction of some of the leavers when we tried to discuss experimenting with alternative remedies. 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.

 

[YippeeKi YOW !!]

Some of us had become very annoyed with the reaction of some of the leavers when we tried to discuss experimenting with alternative remedies.

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 ....

 

[wastwater]

I’d like to see more information on Guinea pig healing as we all know this is superior to the CBT/GET model.

 

[Seadragon]

Welcome back @Cort and thank you so much to everyone who helps keep this board up and running - I am so grateful to you all and really appreciate your efforts.

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 am interested in what everyone has to contribute regarding ME, both on PR and S4ME.

 

[Tiffyshea]

@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 ....

I completely agree. The problem is that there is no money for research on a lot of alternative therapies. In my life I have cured bladder infections with baking soda water, ulcers with Slippery Elm, and migraines with meditation.

But there will never be any "evidence" proving any of these things work for us because there is no money in them.

There are women on the internet blogging about curing their hypermobile Elhers Danlos Syndrome with IM Vitamin C injections. Women who spent their lives bedbound and debilitated now have their lives back because anecdotal information was spread to them and they tried an "alternative", unresearched therapy... and it will never be researched despite the fact that it has the potential to dramatically improve a large number of our lives, because there is no funding for that (not even MacGuff pharmaceuticals, the company that makes injectable Vitamin C, is interested in researching this, btw). Oh and btw, about 40% of us ME/CFSers also have EDS and could be impacted by this.


Forums like this one have been more helpful to me than any scientific study or research to date. Our medical industry and all its researchers do not have our backs, as most of us have learned. They exist in the pockets of pharmaceutical companies and biased research. The medical industry is an industry... composed of for-profit businesses that sell drugs and surgeries - literally. Since there doesn't seem to be an expensive drug or surgery that can help us, we are left on our own. Our biggest fear should be that the answer to me/cfs isn't profitable. What if the answer isn't in drugs or surgeries? What if it is in some alternative thing like the Vitamin C example, and it never gets explored because it has the stigma of the "alternative therapy" label???

The answer to me/cfs is not inside the existing medical model. We have to look outside of it, and I don't feel like we can afford to be super picky about what we're willing to look at and explore.

I've been thinking a lot about this stuff lately because of the very fact that I find these forums so useful. I see power in these forums. Our power is in our communal knowledge. Because honestly anecdotal information is only anecdotal until it reaches a certain number of people's experience, and then it becomes data. Anytime I've wanted to try some new therapy or drug I heard about, I was able to do a search on these forums and find other people that have tried and discussed it (and any research that existed about it) at length. This information has been utterly useful, totally helpful, and has filled me with hope.

And FB doesn't cut it. Not compared to here... being able to read people's actual lengthy discussions back and forth the way it does on this forum is just a lot more personal, and hence a lot more informative than the weird way that fb works.

We are the ones with the biggest interest in finding solutions. We are the ones with nothing to lose. And if we don't have an open and easy way to discuss the things we find that help - all of them - the world of chronic illness will never get anywhere. While I am very thankful for the research that is going on, and I would really like to see more of it, I am even more thankful to all of the people on this forum, in their blogs, and everywhere else, who are posting and talking about their anecdotal experiences and all the crazy things they have tried.

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.

 

[Hip]

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 suspect the brain drain at PR might be more to do with the negative impact of Google's 2018 "medic update" to its search algorithm, as after 2018, PR threads were no longer appearing in the top search results. This means fewer people find PR, and there is much lower readership. So PR then struggles to attract scientific minds.

The disappearance of PR threads from Google is an ongoing problem that we have not found any solutions to. The emergence of social media like Facebook and Discord is another factor causing a brain drain.

My guess is that the 2017 split to S4ME played a lesser a role in this PR brain drain, because these two forums have different cultures.

The scientific culture of PR is often creative and experimental, where patients are not just discussing ME/CFS studies out of academic interest, but also because they are keen to see if there are any new treatment ideas found within those papers. That's the ethos of PR: treatment-oriented, generally scientific (though not everyone on PR is science-based) and self-experimental.

Whereas those on S4ME tend to be scientific, but typically with no great interest in trying treatments on their own back, because they tend to be skeptical that any creative treatment ideas could work without clinical trials. Most medical Reddit forums are also a bit like this: skeptical of treatment ideas.

So I think the sort of patients that migrated to S4ME may be more the scientific but non-experimental types, and thus their disappearance would not much have affected the experimental and treatment-oriented culture of PR. Indeed, it is good to have two different forums with two different cultures to suit these different mindsets.

 

[Wayne]

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.

Hi @Tiffyshea -- A 5 Star post if I've ever seen one. Everything you wrote is spot on in my book. And yes, having a forum where people are non-judgmental about our own unique approach to health issues is a true blessing. Add the diversity of knowledge, and sharing of all the things that work for us; it all makes our journeys just a little easier. And of course, the genuine love and affection we feel for each other that's often on display. Priceless!

 

[Rufous McKinney]

Hi @Tiffyshea -- A 5 Star post if I've ever seen one.

agree !

I was ten years old when I discovered this CRAP and how this was going to come down. I then witnessed my parents hand themselves over to the Medical Establishment.

I walked out at 16. That was a long time ago.

I still hold out hope that traditional medicine can solve something about all this, but until then.....

 

[YippeeKi YOW !!]

OMIGOD, it's like we have twin brains on this issue. I;ve been posting much the same thing endlessly.

But there will never be any "evidence" proving any of these things work for us because there is no money in them.

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.

Which we should probably be grateful for, because as soon as it was proven in research, BigPharm would take it off the shelves, turn it into a toxic stand-alone drug and multiply the cost by a factor of 10, much as they did with tryptophan in the way-back, when it was proven to be effective for migraines.

Because honestly anecdotal information is only anecdotal until it reaches a certain number of people's experience, and then it becomes data.

Totally agree. Anecdotal times 'x' number of positive effects/reactions = DATA.

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

Right there with you ....

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.

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 ....

Your post, @Tiffyshea , was sooooo right on, in soooo many ways, as @Wayne noted, a total 10 Star post .... thank you for it !!!!

 

[Consul]

Im guessing most ppl that are interrested in the science probably read both PR and S4ME as well as twitter.

 

[Rufous McKinney]

and S4ME

I should visit over there more....and I like their summaries of What is Going On: the newsletter type thing is very handy.

 

[Johannes Starke]

Yay, I am so glad Cort is back.

 

[Seadragon]

@Hip 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 think PR has more of a friendly, helpful and community feel than other forums though.

 

[Hip]

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.

Yes, the brainpower on this forum to suggest ideas on what might be causing certain symptoms or adverse effects was definitely higher 5 years ago.

Though suggesting such ideas is also part of treatment, from my perspective, as patients looking to understand why they get certain symptoms or reactions are also often interested in finding solutions to those symptoms. So if someone is able to provide some physiological insight into why a symptom arises, that can be the first step to addressing the symptom.

 

[Sing]

@Hip Well, there is lots of brainpower and heart I am finding in this thread today. It was only by a lucky accident that I discovered the great news that Cort is back, then to see so many valued people, familiar to me from the past, (when I used to participate) joining in.

PR was a lifesaver for me too from its beginning, both for the social support it conveyed in this uniquely isolating, difficult illness, and for the very helpful information I often found. So much was fun, interesting and meaningful to me. When s4me and Health Rising started, I joined them too to learn from their lines of inquiry, but these did not function as much as community. In recent years I only skim or glance at the information, and participate not at all. Now I am like the old dog whose owner no longer bothers with trips to the vet, but keeps as comfortable as possible at home. Translating this to the first person, I have given up on hope for physical healing, even improvement, and am no longer willing to try new remedies and treatments. So that is why I faded away from these forums. 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.

Thanks to you all for your presence, and to the longstanding members and leaders, I thank you for your faithfulness.

Sing

 

[YippeeKi YOW !!]

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.

I agree wholeheartedly, @Sing, and loved your heartfelt and moving comment.... am so glad that you've decided to come back !!!!