Our Weird Idea
History has shown that giving away information for free is a pretty lousy business plan, but that’s been the plan for the past fifteen years. Nobody with these diseases, in particular, should have to pay for information.
While Health Rising is provided for free, producing it is, however, not without cost. Unlike many health focused blogs, Health Rising is not a hobby website or something that Stavya (our technical ace) or I do in our free time. HR provides the livelihoods for one full-time (myself) and one part-time person (Stavya).
Luckily, there is a way that you can pretty painlessly make a big difference with Health Rising. Simply sign up for a $5 or $10 (or more) recurring monthly donation and encourage others to do so. You’ll hardly notice it but that little bit – multiplied many times over – provides a vital source of revenue. Fully a third of our support comes from recurring donations.
Those of you who can afford to, please consider taking the leap, jumping on in and embracing a painless way of supporting good work. Begin a small recurring donation (and then probably just forget about it!). If you can’t afford it – Health Rising will be here for you as well (and you can thank those who gave for that :))
Just over the past month Health Rising:
- Launched the first ME/CFS and FM Cannabis review program
- Completed the 3rd part of HR’s five part Cannabis in ME/CFS and FM series
- Opened the possibility of rewiring the brain without drugs to reduce or even remove pain
- Reported on an exciting new hub of ME/CFS research that opened in Boston
- Outlined new findings regarding mitochondrial functioning in ME/CFS
- Produced two blogs on small nerve fiber findings in fibromyalgia
- Got some straight talk from former Solve ME CEO Carol Head
- Presented a possible silver lining to an ugly situation, Dr. Montoya’s dismissal from Stanford
Your generosity keeps Health Rising afloat 🙂
Over the next couple of weeks we will finish the Cannabis series, post a long interview with Dr. Chedda, report on Dr. Klimas’s big win, illuminate some potential new ways to fight neuroinflammation, identify what appears to be becoming a new hub of ME/CFS research, and embark on a series of recovery stories.
To become a recurring donor, simply go below or to the right sidebar of any page and enter Option #1 in the Do It Monthly section and hit the Subscribe button… (Please note that hitting the Donate button will not work for recurring donations – you must hit the Subscribe button.)
Or simply grace us with a one-time donation. We love those too! 🙂
Hi Cort, I hope it does not matter but I like more a one year big donation then a recurrent donation. Under my real name (can in this country not come out for this ilness). Have done this before.
may I ask you something?
I am 3 decades ill, in the beginning could do once in a while something but after 2 or 3 years 99-98% bedridden, still declining, got more and more symptoms, etc Have tryd so many things back in those days.
could you write please something for the long term severelly ill me/cfs patiets? I feel sometimes that they are forgotten.
reading recoverystorys is when I am honest in my situation sometimes hurtfull. They are for excample bedbound but they can take a plain…It is as if it “all” happens to them (getting better) and not to me, as if I am not trying hard enough. Blame myself then but I can simply no more and am slipping/gliding away.
thank you!
That’s completely fine Konjin. Several other people are doing this. Really appreciate your support 🙂
We’ll have quite a bit of stuff coming out on the severely ill as the Open Medicine Foundation study ends up and they start publishing. They are working on that now. We are planning to do a Community Report on tips for the severely ill as well. Please remind me if that doesn’t show over the next month. The CDC also has their severely ill study going – so the severely ill are finally getting into research studies!
This is great to hear. I’m severe and bedridden too, for years now.
It hurts hearing phrases such as “people with ME/CFS can be bedridden for weeks,” even from established ME/CFS researchers whoI respect. Weeks? Try decades.
I agree with konijn, it really feels like we are forgotten even more than average ME/CFS patients: left out of research because we can’t come to them, forgotten by advocates, ignored by other patients because they are scared to face they might become like us.
It’s great to hear OMF will publish about severely ill and that you will cover it.
Cort I found this fascinating trial on Viagra soothing the heart… the trial has nothing to do with ME but could be why I have slight relief on it. I always thought it was just opening the tiny blood capillaries, including the brain. But heart soothing sounds good too!!!
VIAGRA BLUNTS EFFECTS OF STRESS ON THE HUMAN HEART
https://www.hopkinsmedicine.org/Press_releases/2005/10_25_05.html
Hi Konijin, after 30 years of ME severe at the start, moderate in the middle, but 3 years ago, I was back to being severe and bedridden for 2 years, but the last year and a half I improved with the help of the antihistamine fexofenadine, it seems to have helped me a lot (must have suppressed mast cell activation) and I take the anti-inflammatory Ibuprofen. I take those meds immediately after exertion (or before if possible) I try to have tones not taking the ibuprofen as the stomach needs a rest.
I also take a 1/3 of a 100mg viagra tablet 3 times a day to help open up the tiny capillaries for increased blood flow, even in the brain. I’d take more if I could afford it.
I take viagra because I couldn’t get isosorbide mononitrate for much needed blood flow. It Helps brain fog a little too. (Never take those two medicines together)
it’s important to drink lots of water on those meds and wear medical grade 3 or 4 compression stockings to keep the blood pressure up. Even a compression belt for your torso like a corset. I get more upright time doing that.
Also try LDN start very low and go up slowly
It’s no cure but I’ve had reasonable relief from it. Although I over exerted last week and have been bed ridden for a few days. Probably will last another week and I’ll get a bit better again, and be able to do some chores around the home again. The problem is once I trigger PEM virtually nothing works. I just have to lie in bed waiting.
I tried Mestinon but it made me sick however a friend tried it and got 85% of his health back. He’s on LDN too and together he has a full life. He was bedridden the same period aa me. Shame in intolerant to Mestinon.
There will be something that helps, even a little. It’s worth trying
My advice though is never take the recommended dose first off. Instead slowly over several weeks build up little by little to get to the dose. As we ME patients have low tolerance of some medications. I didn’t do that with Mestinon and I think I blew my chances with it. I warned my friend and he went up tiny incremental doses. And it worked wonders.
Present the facts to your doctor to get certain medications, if they refuse, find another doctor
Best of luck
How about that Mestinon – it can really work in the right person.
https://www.healthrising.org/blog/2016/06/17/mestinon-chronic-fatigue-vagus-nerve-stimulation-exercise/
And Viagra! A UCLA researcher started a Viagra ME/CFS study about a decade ago to open the blood vessels but I don’t think it ever got completed.
Also please try Niacin – Vit B3 – the version that causes flushes. I notice increased mental clarity, reduced pain, etc. when using it.
Sorry I posted this in the wrong comment thread.
Cort I found this fascinating trial on Viagra soothing the heart… the trial has nothing to do with ME but could be why I have slight relief on it. I always thought it was just opening the tiny blood capillaries, including the brain. But heart soothing sounds good too!!!
VIAGRA BLUNTS EFFECTS OF STRESS ON THE HUMAN HEART
https://www.hopkinsmedicine.org/Press_releases/2005/10_25_05.html
“as if I am not trying hard enough. Blame myself then”
You should never blame yourself for failing to not being able to do better then the dozen of doctors you may have visited.
You should never blame yourself for failing to not being able to do better then the thousands of doctors in your country who all could help improve your condition if they only knew how.
You should never blame yourself for failing to not being able to do better then Ron Davis, a medicine Nobel price winner and a very passionate and driven researcher trying to improve his bed ridden son Withney Dafoe.
Yes, some people get better. Some even recover. But please take a look at Cort’s recovery section https://www.healthrising.org/forums/forums/recovery-stories.66/ :
It contains ONLY 81 discussions of people posting recovery stories. And many I read are only partial recovery stories. Many of these 81 people would still be considered chronically ill although no longer severely chronically ill. Relapsing even years later is not uncommon among the few recovered ones.
Those 81 will not be all patients who made a big recovery, but still out of millions of ME patients that is a really small success rate. I think doing a pilgrimage to Lourdes or so has similar success rates for people with diseases like terminal stage cancer.
So NEVER EVER blame yourself for not being able to beat a disease that baffles the entire world. Thousands upon thousands of brilliant medical schooled researchers only now start to get a clue what this disease might be. A single weakened patient cannot expect to compete with that. A patient succeeding to break free is both very lucky to have something that can be solved and must have a willpower greater then what is needed to do and finish the Marathon des Sables.
That is having greater willpower then those runners doing 6 consecutive days of running a single marathon each day in the scorching Sahara desert. Sand is terrible fatiguing to run on.
https://en.wikipedia.org/wiki/Marathon_des_Sables
This battle for sure is not hopeless. But it certainly is not an easy one! Maybe blogs on simple measures to improve quality of life, medical and non medical, could be something helping the most severely ill?
Well said DeJurgen! Please take it to heart Konjin. Among other things, your participation on this website is very valuable.
Beautifully said dejurgen!
We all need HOPE! Support and understanding! This forum and platform gives us that……Thanks Cort!
Issie
Hi Cort,
I wish to thank you for all you do.
This is most certainly difficult illness, which I have had since 1991.
I was in the medical field prior to my illness & never saw patients with such a mysterious Disease.
Hope my donation helps Health Rising. You are such a Godsend.
I did meet you at Dr. Davis, Janet & Whitney’s home.
My best, Penny
Thanks so much Penny.
We’ve both been battling this a long time. I’m about to turn 60 which is a more or less complete mind-blower. Never would I have dreamed 40 years later I would still be battling this… Here’s to more and faster progress ahead.
thank you for your kind words dejurgen! I am for so long so bedridden that I even can not go to a specialist anymore. And her, it is here psychosomatic, childhoodtrauma, etc, they would not even want to try about some meds I read here on this blog. Even my homephysician and others that I have had, coming at my home. they do nothing, want to read nothing, etc
And so I lay here rotting in hell, getting worse and worse.
but maybe you are right about the recovery storys, the same result as like a trip to Lourdes. But there is allways something you want to try if you read good things about it but they do not give it at me. Even for excample low dose naltrexone or so…
this country is like many others so sad…
going to make my donation now because I was even to ill for that.
Thanks to the 8 people who have pledged $80 in recurring donations thus far and the 13 others who have provided single donations 🙂
Thanks to the 17 recurring donors who have pledged just over $200 in monthly donations 🙂 and the 26 people who have pledged one-time donations 🙂
Hi Cort! I would love to post about your fundraiser on Instagram to let as many people as possible know about this. Let me know if that sounds alright to you!
I would love that!
hi cort, I am the severelly ill one. could not make earlyer donation because to ill. do not know if you see my message I wrote on it. if possible and if you want, please contact me. thaks! xxx
Thanks to the 21 people who have contributed $255 in recurring monthly donations and the 32 people who have contributed one-time donations! Thanks!
For some time now I have been a subscriber donating a monthly amount by PayPal, but when I repeatedly tried to change it many months ago PayPal made it extremely difficult and frustrating. It seems they have no way of distinguishing credit payments from charitable donations, and I have tried to reduce my PayPal activities as a consequence. Finally I managed after many attempts and phone calls to cancel this monthly payment on PayPal and have just now switched it to a credit card. Or at least I think I did. Unfortunately, it shows up at the top of your subscription page with a PayPal logo. I purposely added a different credit card which PayPal didn’t have because I don’t want it billed to PayPal. I think you might also advise your donors of this possible snafu. I’d appreciate your help in this matter. With many thanks for all you do, and kind regards, Susan
Thanks to the 23 people who have signed up for $275 in new recurring donations monthly and to the 35 people who have contributed one-time donations! 🙂
Thank you Cort, (and Stavya) for all you do. I am fairly new to this illness comparatively -at least by diagnosis – just 4 years, but my specialist referred me to Health Rising last year and it is invaluable. It keeps me hoping that We all have a chance. So thank you for that. Recurring donation made.
Thanks Jen and how nice that a specialist referred you to this site. Thanks for letting me know and thanks for the recurring donation.
Four years is like 20 with this illness – it really ought to be long enough to find an answer. Unfortunately we’re not there yet but I have hope – real hope 🙂
Thanks to the 33 people who have gotten us to 75% of our goal – $500 in new recurring donation and the 66 people who have generously provided one-time donations 🙂
Cort,
I love the work you are doing and would be happy to contribute if that’s possible without using PayPal.
Thanks Quenby!
We also accept checks if that will work out made out to Health Rising and sent to
Cort Johnson
2555 Hampton Rd. Unit 63028
Henderson, NV 89052
A couple of people have sent us bitcoins (!)
Amazon.com gift cards work great as well come to think of it. 🙂
Most of us aren’t that skilled in dealing with bitcoins, but would you happen to know if Amazon.com gift cards can be sent to you from Europe without big losses to transaction costs or currency conversion losses?
Many people in Europe only have credit cards if they travel a lot. And your readers often can’t travel. For home or town bound people there is little reason to pay annual fees for a credit card but Amazon accepts the debit cards that 99.99% of us have.
If that would be a good route for European readers, maybe expanding a bit on how well it works for sending gifts to you from Europe may gain you some more coin from this side of the ocean.