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

[Stretched]

Yo Cort, does this mean you CAN teach an old dog new tricks? I‘ve been tardy here for any number of reasons, most correlated to what @Sing so eloquently wrote but I’ll do better now that you’re back in the saddle. I was zapped at HRF... . I don’t know how you do it but great to see you return to the scene of the grime!

 

[MastBCrazy]

Glad you will be leading @Cort . Thank you!

 

[cigana]

Welcome back Cort!!

 

[SWAlexander]

I believe they are still the best means of communication available - they are the only venue that I can think of that provides the capability to track conversations and learn from them. I think that's terribly important.

I don´t know the beginning of the PR, but I believe there are more direct subject-related knowledge and most of all empathy.
I can relate to your decision. I led an organization (503c) from 1994, a Website and a forum from 1998 to 2016 (different subject). I canceled the 503c after 1 year and continued without it. I learned from people what is important, which led me to a purposeful and successful step.
I wish you very much success.
BTW I like to read HR.

 

[Celandine]

I haven't been on here in ages because my daughter with ME has largely recovered. This happened in no small part via interventions discovered both here and over at Health Rising. I will be forever grateful to @Cort for starting both and for all the posts from people much smarter than myself. I spent so many hours on here in my daughter's darkest days (not necessarily commenting too much but reading and reading) that it really did feel like a second home. So glad I popped in this week to hear the great news that @Cort is back at the helm!

 

[Rufous McKinney]

I haven't been on here in ages because my daughter with ME has largely recovered.

that's wonderful to hear.

 

[Wayne]

I haven't been on here in ages because my daughter with ME has largely recovered. This happened in no small part via interventions discovered both here and over at Health Rising. I will be forever grateful to @Cort for starting both and for all the posts from people much smarter than myself.

Hi @Celandine -- Thanks for stopping by, and sharing the great news about your daughter. If you don't mind, would you share what you feel were the top therapies that helped your daughter recover? -- Thanks!

 

[Hip]

If you don't mind, would you share what you feel were the top therapies that helped your daughter recover?

It looks like the Perrin Technique breast massage done at home was a key therapy for @Celandine's daughter.

 

[Celandine]

Hi @Celandine -- Thanks for stopping by, and sharing the great news about your daughter. If you don't mind, would you share what you feel were the top therapies that helped your daughter recover? -- Thanks!

I'll start a new thread over in General ME Discussion so I don't clog this one. I'm sure I probably detailed it all somewhere on here in the past. It's all fading a bit now, which is quite nice, but it was a multi-pronged approach and some luck.

 

[lenora]

I feel that we owe the resigned Board our heartiest thanks! A big round of applause. Both circumstances are good for us.

Cort, are you also planning to keep Health Rising. Just wondering. Welcome back! Yours, Lenora

 

[mermaid]

Not been on here for a while, but I was on PR when Cort was running it previously - maybe back in 2009 or maybe before, I can't be sure now!

I felt that this year I had largely recovered, or at least was able to do a lot more than previously having been ill since 2007. At one point I was on my allotment for over 12 hrs a week, though I have slowed that down a bit now.
I have tried a lot of things over the years, some found on PR, that either made no difference, made me worse, or improved me. I clearly am not 'cured' if I now compare myself with some of my age (71), but am doing reasonably well considering, and on a par with some of them, as old age and various ailments kick in for everyone.

At least I was until this week when I got the virus that may not speak its name, (not checked out yet if I am allowed to even name it), and though I am making a slow recovery, I know that I might get problems afterwards. Fingers crossed then. I tested myself Monday and was positive, and tested myself again today, Friday, and still positive. I have totally lost my sense of smell which is weird and not pleasant, and mostly lost my sense of taste, though I can distinguish salty and sweet, but no nice flavours.

 

[lenora]

Hello @mermaid......We're also fighting COVID, or should I say that my husband presently has it and I'm probably next in line. This is after 5 vaccines and trying very hard to avoid the virus. Rod tested positive 3 different times....today is his 4th day with it. To be honest, his symptoms are those of a bad cold and he feels that he doesn't have anything at all, at times. However, his cough and voice belie that assumption.

He must have one of the sub-viruses that are just surfacing. He is on anti-virals and will test again on Tuesday....if he's still feeling better.

I do hope that you don't have any side-effects from the illness. Now we're supposed to get a possible COVID Booster, 2 RSV injections and a flu shot. Even my internist is unsure about the 2 RSV shots. This has gone from the infant population only to elderly people. Small children get it, but it's worse in older people.

The man who gave COVID to Rod (a painter he had employed) was kind enough to phone him and let him know that he had the illness. I wish more people were that considerate....at least you know where it came from. So it looks like another winter of COVID concerns.

You're probably still rather overwhelmed with your move. It was a big one, as I recall. I hope you're well settled and happy. Feel better.....apparently it's making the rounds already. Yours, Lenora

 

[Violeta]

Not been on here for a while, but I was on PR when Cort was running it previously - maybe back in 2009 or maybe before, I can't be sure now!

I felt that this year I had largely recovered, or at least was able to do a lot more than previously having been ill since 2007. At one point I was on my allotment for over 12 hrs a week, though I have slowed that down a bit now.
I have tried a lot of things over the years, some found on PR, that either made no difference, made me worse, or improved me. I clearly am not 'cured' if I now compare myself with some of my age (71), but am doing reasonably well considering, and on a par with some of them, as old age and various ailments kick in for everyone.

At least I was until this week when I got the virus that may not speak its name, (not checked out yet if I am allowed to even name it), and though I am making a slow recovery, I know that I might get problems afterwards. Fingers crossed then. I tested myself Monday and was positive, and tested myself again today, Friday, and still positive. I have totally lost my sense of smell which is weird and not pleasant, and mostly lost my sense of taste, though I can distinguish salty and sweet, but no nice flavours.

Sorry to hear that you have come down with the virus, Mermaid. The current variant seems to be very tuned in to affecting the sense of smell and taste. My daugher had it in the beginning of August and she lost both, too, except for, like you, being able to taste salt. And a couple of other people who had it recently found the same.

I found that tryptophan is supposed to help with the sense of smell and taste, so she ate turkey (she doesn't usually eat meat). Of course zinc is supposed to help, too. Mostly it just took time.

I hope you have a speedy recovery and that your ME/CFS doesn't get any worse.

Here's a study about tryptophan for loss of smell and taste.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8180092/

Interesting, just remembered about the article talking about creating a possible test for ME/CFS found that people with ME/CFS had tryptophan levels that were higher than maybe MS folks. Have to look at it again, I skimmed it last night while having insomnia.

 

[Violeta]

Also I recommended that my daughter take tyrosine for its effect on dopamine. I have to look for what made me conclude that dopamine might help, but the study that I mentioned in the above message also said, "A universal increase in tryptophan and tyrosine in cellular PBMCs was found in both ME/CFS and MS."

Seeing that COVID has so many similarities to ME/CFS, I just find this interesting.

Edit in: Loss of smell or reduction in smell common in Parkinson's, which is well known to be a dopamine deficiency syndrome.

 

[Violeta]

However, this study says that in long COVID, there tends to be a depletion of essential amino acids, tyrosine and glutamine. So although this would be a difference between ME/CFS and long COVID, it may be a good indication that tyrosine would help loss of smell and taste.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8708091/

 

[Woodyrob]

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

Phoenix Rising is beginning a new chapter as Cort returns as administrator and owner of PR, with immediate effect!

Cort, a person with ME/CFS/FM, founded the Phoenix Rising website in 2004, and the Forums in 2009. Over the next few years it took off in the ME/CFS patient community, providing up-to-the minute research and clinical information.

Yay!!!!

 

[mermaid]

Sorry to hear that you have come down with the virus, Mermaid. The current variant seems to be very tuned in to affecting the sense of smell and taste. My daugher had it in the beginning of August and she lost both, too, except for, like you, being able to taste salt. And a couple of other people who had it recently found the same.

I found that tryptophan is supposed to help with the sense of smell and taste, so she ate turkey (she doesn't usually eat meat). Of course zinc is supposed to help, too. Mostly it just took time.

I hope you have a speedy recovery and that your ME/CFS doesn't get any worse.

Here's a study about tryptophan for loss of smell and taste.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8180092/

Interesting, just remembered about the article talking about creating a possible test for ME/CFS found that people with ME/CFS had tryptophan levels that were higher than maybe MS folks. Have to look at it again, I skimmed it last night while having insomnia.

Thank you @Violeta - interesting to know about the tryptophan connection. Happily, though I am not entirely recovered from Covid (I tested negative a week ago after 10 days positive), my sense of smell and taste has returned, fairly quickly. I am still struggling with energy, and trying to not push myself too much, hoping it's just post viral and will improve soon.

Unfortunately, I also have a chronic stomach condition, which is known as Functional Dyspepsia (my hiatus hernia might be involved too), and it had flared up horribly this week, and I am running out of steam quickly and feeling miserable with the pain. I am reluctantly taking Omeprazole which can help sometimes, but I try to make it a short term dose, as I don't like the long term side effects.