Looking Back – Looking Ahead

I like to use the donation drives to try to see where we are. Last year at this time, what stood out to me was that the long-awaited burst of large long-COVID clinical trials had finally begun. No fewer than 14 large clinical trials with 200 or more participants were underway (!). That’s unheard of in the ME/CFS/FM space, and if successful, these long-COVID trials should open the door for trials in those diseases and others.

The deeper researchers look, the more they find. (Think of the different colors as emerging subsets from what used to be “ME/CFS” or “long COVID”.)

Otherwise, I felt that the deeper researchers dug into the molecular foundations of these diseases, the more they found. That has only expanded over the past year. I’ve been continually surprised by how much deeper my searches go now. I dig down into one finding only to find several others that are potentially connected to it pop up. On the one hand, the blogs are getting more complex (sorry!); on the other, it feels like we’re on the precipice of so many things.

That’s very good news, but it highlights the need for something these diseases generally lack: large, comprehensive studies with the power to separate the wheat from the chaff. We know that many systems are involved. That’s clear.

Now we need to uncover what’s driving these massive, system-wide dysfunctions. We have some nice clues: blood vessel problems, energy production problems, immune exhaustion, neuroinflammation – there is no dearth of potential culprits! Now that we have statistical techniques that can crunch massive amounts of data and spit out answers, what we need are large studies that take advantage of them.

The good news is that the most encouraging thing to me about this year is similar to what excited me last year – the emergence of big, bold efforts – not in clinical trials, but in the research arena.

We have a company – PrecisionLife – that has wholeheartedly taken on ME/CFS and long COVID and is confident they can get the drivers of these illnesses and uncover treatments.

There’s the Open Medicine Foundation’s massive 1,000-person Bioquest study, which, by the way, just started analyzing samples; the 1,000-person Amatica gene expression project; and DecodeME’s mega SequenceME project.

Honestly, SequenceME, with its $20 million price tag, looked like a pipe dream to me until the UK government recently kicked in $6.5 million to get it off to a nice start. That study is going to rewrite what we know about the genetics behind these diseases, and it underscores what these fields really need – massive federal support.

We can see the outlines of the puzzle. We pretty much know where to look. Now we need to put it together.

That’s our weak link. We have oodles of exciting research findings. Now we need more large projects that crack the code on these diseases.

Researchers are interested – the multiplicity of international conferences (three in the last month or so) speaks to how engaged they are. Notice, though, that with the exception of the recent UK funding for SequenceME, these are all privately funded efforts.

We’ve seen the UK, Germany, and Australia governments pump in more funding, but then there’s the elephant in the room – the NIH in the US. The biggest medical research funder in the world (and it’s not even close) needs to finally embrace these diseases. That would be a game-changer, and efforts are underway to get it to do that.

Coming Up

In the immediate blog queue are Health Rising’s first blog post on hyperadrenergic POTS in 7 years, a talk with Stanford researcher Michelle James on her whole-body MRI ME/CFS study, the current situation for ME/CFS and long COVID at the NIH, and “The Monster That Ate Long COVID”.

Plus, we are finally, finally, (no kidding this time!), going to produce our Patient and Doctor Review maps. Stay tuned, and thanks for listening.

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. Or grace us with a one-time donation via Givebutter, PayPal, an Amazon gift card, or Bitcoin. Health Rising also gratefully accepts bequests.

Note that all new blogs now use Givebutter to process donations, and the PayPal donation links on older blogs still work, as do all recurring donations made through PayPal.

One-Time Donations

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

(1) Become a Recurring Donor – Health Rising’s recurring donors provide its 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 to Health Rising’s way monthly, but we do.

Small, monthly, recurring donations make up about 40% of our budget! They keep us going month after month, after month.

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 then 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.

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 on 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@gmail.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!