The Big Question
It’s been a long road, but some of the puzzle pieces seem to be fitting together.
The question I keep asking myself lately is, “Are we on the cusp of something big?” It looks like pieces of the puzzle are starting to fit together, and it’s largely happening as our creative researchers use the latest technology to dig deeper and deeper.
If ME/CFS and long COVID were not real diseases, they’d keep hitting dry wells, but just the opposite is happening. The more technology they bring to bear, the more they’re finding.
Single-cell immune studies suggest that B, T, and NK cells are all exhausted. The muscle studies are revealing, at a very precise level, issues that may be hindering blood flow. Metabolic studies consistently reveal issues with energy production.
Whether it’s proteomics, metabolomics, transcriptomics, or lipidomics, we observe the same general trends emerging. Immune cells that are too exhausted to be effective or mature, systems and cells with energy production problems, dysregulated parts of the brain that are producing fatigue and pain, entire systems that aren’t responding to exertion on a molecular level.
Health Rising’s Commitment
Health Rising is doing its best to put the pieces of the puzzle together. That’s why we cover every aspect of these diseases, from the brain to the blood, to the muscles, the immune system, pathogens, and the gut. It’s a heavy lift, and the blogs are complex – and getting more complex (as they should be), as researchers dig even deeper into the foundations of these disorders.
Nobody can tell when things will come together or when treatments will become readily available for people with ME/CFS, long COVID, POTS, and fibromyalgia. Our commitment, though, is to be there every step of the way.
Coming up, we have a series of interviews with some leaders in the field: Ian Lipkin (“we’re getting closer”), Michael Peluso (excited every day), Dr. Ruhoy (her new book), Thomas Henderson (laser red light therapy) and Klaus Wirth (why ME/CFS can be so disabling and why his drug may help).
Our Quickie Summer Drive
Over our quickie – two weeks or so – summer drive, our goal is to raise $15k to keep Health Rising moving forward. Our needs are modest but real. Donations provide a roof over my head and enable Stavya to produce programs and keep the website running smoothly.
Aside from a few sponsorships (thanks to the Solve ME/CFS Initiative, the Open Medicine Foundation, ProHealth, and the HHV-6 Foundation), Health Rising is wholly community-supported.
Small, medium, or large donations – they all add up over time. If you’re up for a recurring donation, it’s one way to painlessly make a big difference with Health Rising. Sign up for a $5 or $10 (or more) recurring monthly donation – you’ll probably hardly notice it, but that little bit, multiplied many times over, has become a vital source of revenue for Health Rising.
Or grace us with a one-time donation via Givebutter, Amazon gift card or Bitcoin donation. Health Rising also gratefully accepts bequests.
Transitioning from PayPal to GiveButter!
PayPal has always raised some hackles, but it was a simple, if cumbersome, system for us to use. Health Rising is growing up a bit, though, and as of June 22nd, we transitioned to a system called GiveButter, which significantly reduces my workload.
Note that you can still use your PayPal account to support Health Rising via Givebutter. (You can also use Venmo.) Recurring donations made with PayPal will also continue to work, and if you’re happy with PayPal, there’s no need to switch.
If you would like to switch your recurring PayPal donation to Givebutter, see below.
One-Time Donations
(4) Make a One-Time Donation — One-time donations are Health Rising’s biggest source of income.
Use our handy donation widget in the next section to make a one-time or recurring donation. You can use your debit/credit card, PayPal, or Venmo account to donate via Givebutter.
Recurring Donations
Please push a little money our way.
(1) Become a Recurring Donor – Health Rising’s recurring donors provide our financial bedrock. They allow me to sleep better at night.
The great thing about recurring donations is that even small ones really add up. You might not notice the $5, $10, or more dollars going Health Rising’s way monthly, but we do. Small recurring donations make up about 40% of our budget!
To become a recurring donor, use the widget below, the one found on most blogs or pages, or on the right sidebar of any page, choose monthly, and click the amount you would like to donate ($5, $10, $15, etc.) and click continue.
You can use your debit/credit card, PayPal, or Venmo account to donate via Givebutter.
(2) Already a Recurring Donor? Want to give more? – Simply contact me using the Contact form (accessible via the link in the teal menu bar below the logo area). I will stop your current donation, and you can restart it.
(3) Become a Recurring Donor with Online Banking (non-Givebutter – Use Bill Pay or similar programs at your bank to send checks straight to us. If you’re with Wells Fargo, we can set up automatic monthly donations. Please get in touch with me using the Contact page link found in the teal menu bar below the logo area..
Checks
We love checks! Please make out checks to Health Rising and send them to the address below.
Cort Johnson
404 Boulder Hwy
PO Box 91245
Henderson, NV 89015.
Please note that, as I am away during late spring and summer (I operate Health Rising out of a trailer/van), it may take several months during that time before I can cash your check.
Bitcoin
Get Rid of Those Darn Currency Conversion Charges – Use Bitcoin! – Bitcoin has been very good to us. A Bitcoin donation from around ten years ago is now worth a hundred times what it was.
If you’re not a U.S. resident, those currency conversion charges can be killers. Make those charges a distant memory by using our Coinbase account to funnel some bitcoin our way. Our Bitcoin address is 18D9JkiGxPcpx8RYNcG5p2Be1joU9J6v5D
Amazon Gift Cards!
Amazon is Health Rising’s go-to place to get electronic accessories, books, solar power to keep us in the web, etc. Simply go here, find your gift card, and put my email address (cortrising@gmail.com) in the “To:” box, and voila – instant Amazon gift card!
Bequests
Health Rising gratefully accepts end-of-life donations. Please use the address below. Contact us at cortrising@gmaill.com for more information.
Cort Johnson
404 Boulder Hwy
PO Box 91245
Henderson, NV 89015.
Become a Sponsor
The Solve ME/CFS Initiative, the HHV-6 Foundation, ProHealth, and others have sponsored Health Rising. Interested in having your corporation sponsor us? Find out more here.
Switching Your Recurring Donations to Givebutter
You can turn off your recurring PayPal donation using the method below. Alternatively, you can use the Contact link on the teal menu bar near the top of any page, and I will take care of it.
- Log in to your PayPal account on the website.
- Select “Payments”.
- Choose “Managing Your Automatic Payments”.
- Select the subscription you want to cancel from the list of merchants and follow the instructions.
Thanks for your support!
Hey Cort,
I’d like to donate via the GiveButter widget, but the UI isn’t fully showing on my browser. After clicking Choose Amount, I can see the bottom of a black box, but most of the box is cutoff so I can’t interact with it. Can you make the widget larger or link to it as a separate page? I got the same results using Brave, Chrome, and Safari on MacOS.
Thanks, JM for letting me know. I will send it on to Stavya, and we will get it worked out. 🙂
Thank you for everything you do Cort! You’re one of the most important people in our community and have a special ability to translate the science that would fog our brains to take it in (if possible at all sometimes!) into something we can all understand without overdoing it… THANK YOU!!
Thanks Chips! Glad it’s at least somewhat intelligible. The deeper researchers go – a good thing- the more complex I find this gets. Glad it’s getting through.
Health Rising Staff,
My name is Rebecca Krell and I accidentally paid for two monthly subscription donations. As a result of that error, I am requesting to keep the $30 per money only and cancel the $28 effectively and please issue me a refund on my credit card. Thank you.Rebecca Krell
Hi Rebecca I received your email requesting and just haven’t gotten to it yet but will soon. Thanks for being a recurring donor – and at such a generous level 🙂
I totally agree with Chips.
You are a real treasure to all of us in this community Cort!
Thank you for all you do.
Thanks Gail!
Hi Cort. I tried to make a donation with my Credit Card but in a way the system does not respond. Maybe it has to do with me living in South Africa? you could maybe check and I will try again in a week or so. I really like to donate. Your work had an immense influence in my understanding of ME and all that is connected to it. Keep it up!
Sorry to hear about the trouble but thanks for trying. I’m sure we can work something out. I’ll send this on to Stavya.
Cort. It seems to me that your website does not allow me to enter my telephone number and the credit card payment does not go through without it.
Absolutely the most informative go to place for Comprehensive Organized
Research Therapy aka CORT. The only therapy I recommend for our complex debilitating illnesses. And Cort has earned every penny. This is not a donation to charity but rather a very affordable means to answers you can’t find elsewhere unless you search and even then I probably couldn’t grasp what I read from journal articles.
Cort , you earned every dollar you get from these fund raisers . I wish a wealthy entity could do a matching amount to double your income. An unrealistic thought but I would wish that for you. Let’s reward Cort for his due diligence!!! ( Full Disclosure: I am not related to Cort and I do not have a financial interest in this recommendation 😄)
Woo! How nice, Sanda! (Comprehensive Organized Research Therapy aka CORT 🙂 🙂 :))
“I wish a wealthy entity could do a matching amount to double your income.” – I’m all for it! 🙂
Your articles are very important to me – – you perform an invaluable service, Cort. Happy to continue to support you on a monthly basis.
Thanks so much Rebecca. Recurring donors are so helpful! I don’t know what we’d do without them 🙂
Thank you, Cort, for your generosity and kindness. You are truly indispensable to us ME/CFS patients.
For me, it will be an Amazon gift card.
Yesterday, I had an appointment at a major hospital in France, in the neuromuscular department, and according to the doctor I saw, ME/CFS doesn’t exist — it’s a controversial illness, blah blah blah… and it’s just depression. I am SHOCKED!!! I thought we had moved past this kind of thinking among neurologists? I am very angry, because if this illness were male-dominated, it would have been taken seriously — just like HIV/AIDS was.
Good lord…depression. So sorry you had to go through that – and at a major hospital. Studies showed ME/CFS was different from depression decades ago! The arrogance of uninformed and lazy doctors…You would hope that to make a diagnosis they would at least check out the facts of the disease….
I don’t know if this will help but I did an article 11 years ago:
How to Prove to Your Doctor You’ve Got Chronic Fatigue Syndrome (ME/CFS) and are Not Just Depressed
https://www.healthrising.org/blog/2014/04/26/prove-doctor-youve-got-chronic-fatigue-syndrome-mecfs-just-depressed/
and this
Ten Ways to Prove That Chronic Fatigue Syndrome (ME/CFS) is a Serious Illness
https://www.healthrising.org/blog/2018/12/07/ten-ways-prove-chronic-fatigue-syndrome-serious-illness/
On a happier note, Amazon gift cards are great! Thanks! 🙂
I have already made my donation, but now I must question why in the world would you write a sentence that began…
If ME/CFS and long COVID were not real diseases… Was there ever any question?
“Long-term Risk of Heart Attack, Stroke and Death Doubles with History of COVID-19 Infection. A study found that people with any type of COVID-19 infection were twice as likely to have a major cardiac event, such as heart attack, stroke or even death, for up to three years after diagnosis.” Sounds real to me.
“Are we on the cusp of something big?” It looks like pieces of the puzzle are starting to fit together, and it’s largely happening as our creative researchers use the latest technology to dig deeper and deeper.” Balderdash!
I have had ME/CFS for more than 40 years and we are just now on the “cusp” of learning something and putting the pieces together?
In 40 years, there has not been one diagnostic test or proven treatment developed for either condition by our “creative researchers”.
I work with Vietnam veterans who have children with health problems. The vets themselves have horrible cancers and other conditions that are killing them at a rapid rate. The government slowly and begrudgingly adds conditions each year for disability compensation (but none for the children)).
One veteran wrote a book about this sad state of affairs “Waiting for an Army to Die”.
Sometimes I think they are also waiting for us to go away too.
In the coming 40 years, there will still be no test for ME/CFS. ME/CFS is nothing more than an inconsistent set of criteria. They are different diseases – subgroups – under this umbrella concept. I am not optimistic at all. But luckily for Cort, he can continue to write blogs for many more years and pay for a roof over his head thanks to all the donations. Not that I begrudge him that, but it is a business model. He does good work for this community. But by now, he earns more than 100 thousand dollars a year with this website. Of course, there are costs associated with it. There are many people who earn less. That said, everyone is free to give what he or she wants.
Gijs, I find your comments about Cort and the running of this website offensive.
Gail, It’s not meant to be offensive. But just like so many websites and postcast on YouTube, it is just work. With which you can earn money. For Cort it has simply become his income and work. That doesn’t mean I don’t appreciate and respect Cort. It is what it is. Previously, Cort was transparent until 2018. After that, I no longer see any updates to his total donations until 2025. I estimate his total donation (income) to be over 100 thousand dollars per year. Everyone can think what they want about that.
OK Gijs.
If we’re trying to bring in $15,000 in this drive and around $65,000 in our main drive – and we have recurring donors – so yes the website is bringing over $100,000 a year.
My income comes to about $75,000 a year. About a third of that goes to putting money away for retirement (at age 65) that I was never able to do before because of well, 40 years with ME/CFS, which prevented me from making an adequate income. My father mostly supported me for decades and for over 20 years I put NO money at all into Social Security. For the rest of those I worked mostly part-time menial jobs and put very little into Social Security. Only in the last ten years of my life have I had anything approaching a normal income.
My father left me a small inheritance which is invested. I do not own a house or any significant assets other than the car and trailer I live out of. Let’s just say that my financial future is very uncertain.
You can think what you want about that.
Dear Cort, this is not an attack on you as a person. I think you are a good person. You certainly do good work for the ME community. I wish you all the best. But it is just an observation that it is a sort of work for you. Nothing more, nothing less. Thank you for your clarification. For most ME patients, the future is uncertain. Either they receive no income at all.
It certainly is offensive and sounds like it was meant to cast aspersions on the character and ethics of Cort.
If you are trying to say Cort has sat behind a desk in a fancy air conditioned office for all these years, think again.
I have followed Cort’s journey since ‘Phoenix Rising’ days and can honestly say, ‘if not for the hope and dogged consistency of his communications I would be long dead.’
Thank you Cort for all you do and all you have done for this oft forgotten community.
With much respect,
Gail
Thanks Gail. Appreciate it 🙂
What and nonsense.
Why would you say this “In the coming 40 years, there will still be no test for ME/CFS. ME/CFS is nothing more than an inconsistent set of criteria. They are different diseases – subgroups – under this umbrella concept. I am not optimistic at all. ”
My mouth gaped open. In 40 years with all the advances in technology going on you really don’t think we will have a test for ME/CFS. Maybe we should bet something. I’ll bet in five years we will at least have a diagnostic test for a subset.
I don’t believe that in your heart of hearts you believe this way, because if you did why are you taking the time and effort to keep up with these blogs and the research?
Perhaps, after almost 30 years of ME/CFS, I’ve lost hope and become too negative or skeptical. Of course, there will come a day when this disease will at least be truly recognized. I admire your hope and positivity.
Very nice of you to say, Gijs! Thirty years is a long time for the disappointments to build and build particularly in this field. Completely understandable. I must say my work with Landmark Education provides a kind of helpful antidote to resignation.
Oh my goodness Betty, words fail me. I think many of us get enough negativity from our unbelieving Drs and family members without your “balderdash” comment and your inference to questioning having already given a donation.
This is offensive to Betty.
Gijs, you seem to be speaking on Betty’s behalf now?
You mean just like you speak on Cort’s behalf ? -:)
I’m sorry Gijs, perhaps I am just getting cranky in my old age, as I no longer seem to be able tolerate your thinly veiled criticisms.
I will end by saying, once again, that I am grateful for all Cort does for this community.
I was just making a comment about Cort and his donations. If you read Cort’s response, he admits I was right. Nothing more, nothing less. I appreciate Cort’s work too. But don’t put words in my mouth or make false insinuations. I wish you all the best and hope you live much longer. Perhaps I’ve become a bit negative and skeptical after 30 years of ME/CFS. Remember, we’re in the same boat 🙂
Hi Gijs, I run the National Birth Defect Registry (www.birthdefects.org) a comprehensive inter-relational database that collects data entered online on all kinds of birth defects (both structural and functional) as well as the health, genetic and exposure histories of both parents.
The major causes of birth defects were all first identified by reports of similar birth defects with the same exposure history. This includes thalidomide, methylmercury, radiation, DES, Fetal Alcohol Syndrome and many others. But, these were found when a doctor or researcher began to see a pattern of disabilities and began to investigate similarities in the prenatal histories.
This method called “the alert practitioner” takes time and an interested researcher. Our registry does this on a grand scale and can investigate links very rapidly.
Our tag line is “because every birth defect has a cause” and that is absolutely true.
We have 10,000 cases registered. I won’t go through the history of all that we have been able to accomplish with this project. However, I believe the same kind of effort could define different subsets of ME/CFS and potential causes and treatments.
Clearly the cases that happened in the beginning at Incline Village and in other clusters around the country at that time had a definable cause and I think that some of the original researchers know this.
Other conditions with similar symptoms may have been swept into this basket over the years for lack of being able to diagnose the cause of those problems.
Our country is in need of a specialty in medical diagnostics. This would save a lot of money in the long run.
Hi Betty, Interesting this comparison. But a birth defect is also variable just like ME. So which defect X? Is caused Y? The same goes for ME. Which defect of ME X? Is caused Y? Consider all subgroups within ME. This complicates demonstrating a causal relationship. Some clues for ME are, in my opinion, disturbance of blood flow to the brain and organs, NK cell dysfunction, and autonomic nervous system dysfunction (stress regulation). That can explain all symptoms.
Hi Gijs, Thank you for your reply. You are entirely correct in noting that different subgroups of ME/CFS may have different symptoms. But, this is true for all illnesses.
The director of the NIEHS used to say that “genetics loads the gun and environment pulls the trigger”. (In this case, environment may include viruses, medications, maternal illness, environment toxins, etc.) So the manifestations of an illness are not only dictated by exposure but by individual genetics.
However, in the case of birth defects, we look for the most serious and usually rare defect; in the case of thalidomide deficient limbs. This is how thalidomide was first identified, but in retrospect, it could cause deformity in almost any part of the body including severe hearing loss.
I hope you have read Osler’s Web by Hilliary Johnson. The illness she tracked in her ten years of research all over the country had a clear cause. Just because they don’t know what it was (or do they?), doesn’t mean it didn’t exist.
Think about ulcers. We used to say they were caused by stress until two doctors discovered that the actual cause of H-pylori was a bacteria which could be treated with antibiotics.
This is amazing research. Fibromyalgia is so unknown and since people can’t see your total body pain 24/7 it is hard to understand. I found a picture of a body that looks like I feel daily. It shows all the nerves in the body all black and blue. It is the only way I can explain my horror I live for 34 years. Thank you for researching fibro and fighting for me without knowing me. Hi there!
Hi Cort, I’ve managed to give another small donation in the hope of helping get you to your goal.
Appreciate all you do,
Gail
Thanks again, Gail! I’m happy to say that the donation drive was a success 🙂