1.
PRNewswire.com: Clinical trial provides preliminary evidence of a cure for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long Covid
Wow, that’s a dramatic headline, isn’t it? Let’s hope the treatment lives up to the headline!
From the press release: “Cortene Inc. announces publication of its InTiME clinical trial in which a short subcutaneous infusion of its experimental drug, CT38, achieved sustained symptom improvement in ME/CFS.”
2.
Virios Therapeutics: Virios Therapeutics granted new patent for antiviral inhibitor combination
From the press release: “…the United States Patent and Trademark Office has granted Virios Therapeutics patent exclusivity on its valacyclovir-celecoxib combination drug candidate to 2033. The Company’s intellectual property portfolio now includes 21 issued patents, consisting of 13 issued U.S. patents and 8 issued foreign patents, with exclusivity into 2033. This portfolio of patents also covers the Company’s lead development candidate IMC-1, a synergistic, fixed dose combination of famciclovir and celecoxib, which is in Phase 2b development for the treatment of fibromyalgia.”
And click here to learn more about IMC-1, Virios’ antiviral/anti-inflammatory drug combination.
3.
JillCarnahan.com: Functional medicine vs. integrative medicine | A deep dive into which is better
I haven’t talked about it much here on Fed Up, but in my fibromyalgia group on Facebook, I always recommend physicians who practice either functional medicine or integrative medicine whenever a member asks, “What’s the best doctor to treat fibromyalgia?”
I know there are some really good conventional doctors out there, so I will never poo-poo that entire group of medical providers, but in my own personal health journey, the only time I’ve made substantial progress toward recovery/feeling better is when I’ve worked with a functional or integrative doctor.
I discuss the benefits of working with these types of doctors and how to find one in this post.
4.
Pulse.co.uk: NICE to hold roundtable in attempt to salvage paused chronic fatigue guideline
From the article: “Our aim throughout this process has been to use the best available evidence as well as the lived experience of people with ME/CFS to address and resolve the continuing debate about the best approach to treating people living with this debilitating condition.”
5.
LB Health & Lifestyle: Ten tips to improve digestion
From the article: “You could be eating a diet full of fresh organic, in season unprocessed whole foods but if our body isn’t digesting and absorbing the nutrients from these foods then we won’t receive the benefits of them and can experience digestive problems. Therefore, a more accurate phrase is ‘We are not what we eat but what we digest and absorb.'”
And an extra…
Pain News Network: Study finds marijuana reduces pain, but worsens self care
From the article: “A new study may have inadvertently reinforced some of that stoner stigma, finding that marijuana use reduces pain but significantly worsens patient ‘self-care’ – a broad category that includes behavior such as motivation, physical activity and appearance.”
GoFundMe update…
I just posted another update on my GoFundMe campaign. My contractor actually broke ground on my foundation this week!
Essential oil webinar…
The Natural Creator School is hosting a free webinar called “Four Essential Oils Every Skincare Nerd Needs” this Wednesday, Sept. 15, at 2 p.m. ET.
Learn more and/or register here!
COVID-19 vaccine and fibromyalgia…
I continue to hear from readers who ask me if I think they should get vaccinated for COVID-19. I’ll share my usual answer in a moment, but first I want to post an opinion from Dr. Ginevra Liptan, who is a fibromyalgia specialist who also has fibromyalgia.
This is what she wrote in her newsletter this past week:
“I often get asked whether I recommend the vaccine for fibromyalgia patients as many folks have been really concerned that it might trigger a long flare or cause other negative effects. My fibromyalgia patients have actually done surprisingly well with the vaccine, and the Pfizer vaccine seems to be the best tolerated. I strongly recommend the vaccine for all my patients, but of course the decision is complex and should be discussed with your personal doctor. I just want to share my opinion to add into your consideration.”
By the way, if you aren’t subscribed to Dr. Liptan’s newsletter, then you should be! She’s amazing, and so is her newsletter. You can sign up here!
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A few months ago, I wrote an article, which included opinions from several fibromyalgia specialists regarding the vaccine.
You can read that article here!
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Whenever someone asks me about the vaccines, this has been my answer for the past few months:
First, I have not been vaccinated yet because (1.) I am concerned about how fast the vaccines were brought to market, so I want to see how others are reacting to them, and (2.) I feel some measure of comfort from EpicGenetics’ recent study, which shows people with fibromyalgia have a sort of natural immunity.
Before the pro-vaxers jump me: I am not anti-vax! I am not a conspiracy theorist! I have received various vaccines over the years, and I will continue to do so. I am just hesitant about these particular vaccines.
That being said, I am watching the situation with the delta variant, and I will re-evaluate my decision if/when there’s a great uptick in cases over the fall.
So those are my personal thoughts, and now I’d like to share with you what I am seeing among members of my fibromyalgia group on Facebook. As you can imagine, the vaccines have been a hot topic of discussion for months now.
In general, I will say around 90% (guestimate) of group members who have been vaccinated were able to successfully tolerate the vaccines without any major issues. They typically have the same side effects as they would with the annual flu vaccine … the usual sore arm, body aches, some fatigue, a bit of a fever sometimes.
It’s not unusual for people to feel a brief flare up of their fibromyalgia symptoms, but this seems to pass within a week or less.
About another 5% of people have a little longer flare up of symptoms, lasting from 2-4 weeks before settling down.
And finally, there is a small group who were vaccinated and continued to have a flare up of fibro symptoms for longer than a month, but that’s a pretty rare occurrence from what I’m reading.
Obviously, it’s a personal decision to vaccinate or not vaccinate. I hope this information might be helpful for those of you who are still wrestling with a decision.
I’m Donna, a longtime newspaper reporter, health writer and chronic illness thriver! Fed Up with Fatigue provides weekly news, research, treatments and more to help you live better with fibromyalgia and/or Lyme.
Donna, Thank you for the info re: vaccines. Im on the same page as you, for now.Its good to know that I am not alone in my personal feelings. I keep safe and very cautious, keep informed and I watch.
Be well and keep safe and the best of all with your move next month…God willing! Maureen
For me it’s a real farce that fibromyalgia provides protection. Got it back in March 2020 when you weren’t supposed to mask. 18 months later my Luba are still scarred, gasping and horrible fatigue. Fatigue wise than I ever had from fibro. I am definitely vaccinated as I don’t want to know how bad it would be for me again.
As to the vaccine being badly put together they knee a bad coronavirus was coming soon. They’d been working on this vaccine for 10 years and only had to tweak it. Just like the flu vaccine is tweaked evert year.
I know, right?! Fibro provided me NO protection from Covid, when I got it in October, 2020. FMS and my CFS made being a Long Hauler particularly fun (not). We’d been super careful about *not* exposing ourselves, but got the stupid virus anyway, because, welp, immunocompromised…..
So, I was right in line to get the vaccine, and it actually helped clear up my Long Covid stuff. I just got my booster shot last month, and had almost no symptoms at all.
For anyone waiting for more results – they’ve vaccinated over 6 billion people – half of the world’s population has had a shot. But ok…..continue to do your own research, and hold that “clinical trial” in your basement lab. Or just admit it, you really *are* anti-THIS-vax. Whatever….enjoy yer freedum.
I received an email from Dr. Jacob Teitelbaum stating that some Fibromyalgia patients were actually seeing improvements after receiving the Covid Vacination. I have one shot in and the 2nd in a week. My fingers are crossed!!!