Doylestown Fibromyalgia & ME/CFS Community and Support Group

This sounds interesting for chronic fatigue patients. Low oxygen, huh.

Maybe even a little related to the fibromyalgia study we discussed during the meeting using hyperbolic oxygen treatment.

028 - New findings: more evidence of poor oxygen perfusion in the brain. We seeing high levels of lactate and low levels of choline in the brains of Gulf War Illness sufferers. This quick update covers our new analyses and why the...

Money for long covid!

Sen. Bernie Sanders introduces $10 billion Long Covid Moonshot legislation to support research, healthcare, education - The Sick Times Last week, Sen. Bernie Sanders introduced the Long Covid Research Moonshot Act of 2024. The bill allocates $1 billion in federal funding per year for the next 10 years for Long Covid research, treatments, public health education, and expanded healthcare. A draft version of the Act received thousands...

Terrific study on post exertion malaise!

batemanhornecenter.org

For millions of pain patients, medical cannabis improves their lives.

For millions, medical cannabis has been an important tool to help manage chronic pain and other conditions. Patients need to trust how their medicine is sourced and produced. Like other prescription drugs, medical cannabis should be researched and regulated, and medical providers should be educated on its use.

Cannabis therapeutics help millions who have not found pain relief through traditional options, but the lack of federal laws creates significant challenges. A national medical cannabis program would ensure uniform regulations, restore patient rights, and provide nationwide access to cannabis for therapeutic use and research.

You can help advocate for better access and regulations. Use the link below to access tools from Americans for Safe Access.

https://www.safeaccessnow.org/safeaccess4all_advocates

It is time to take action!

This is from Sam:

For those that follow herbology or David Winston, he will be presenting in Doylestown on Sept 7th. Information and tickets here: https://bluestembotanicals.com/collections/education-workshops/products/adaptogens-herbs-for-strength-stamina-and-stress-relief-with-david-winston

He also has a great book on herbs that support the nervous system, which are helpful for ME/CFS, Fibro, and LC
https://www.amazon.com/Adaptogens-Strength-Stamina-Stress-Relief/dp/1620559587/ref=sr_1_1?crid=2GJPIL7EDDYUG&dib=eyJ2IjoiMSJ9.ONe6XIz31YE6Gv9gV2hL8qKof3XcGPYBL-MRiu0WYktCKUKIID4I8xpWge789Hp0mHOeWIyFIbdWEfI0ZNZSOTbY59iVqjXyaJ5-06A3uUv8k3I8Qwu4QDc-QWeJ4gFYeRAYvmT-awoaaYtHvb6UcQ.UW8ULx14vfc2di6InGewnoveISvQWHyuZcaw_6jMCWc&dib_tag=se&keywords=david+winston+herbalist+books&qid=1723249287&sprefix=david+wins%2Caps%2C82&sr=8-1

9.7.24: MEDICINE OF THE SOUL: THE RITUAL USE OF PLANTS with David Winston On September 7, 2024 we are honored to be able to host one of the great herbalists of our time for an intimate gathering at our farm. David Winston, RH (AHG) has devoted his entire career, spanning over 5 decades, to connecting people with the healing power of plants. * MEDICINE OF THE SOUL: The Rit...

We're live! Join us on Zoom for the virtual meeting.

The link is in the private group

New smart wearable device that's made for chronic illness - not healthy people. It claims to help you pace better. It looks at your sleep and activity level and tells you you when you need to rest to better preserve your spoons.

Has anyone tried it yet?

Pacing Post-exertional malaise (PEM) refers to the worsening of symptoms following physical, cognitive or emotional exertion.It isn’t just a feeling of general tiredness, but can include severe fatigue, pain, cognitive dysfunction, sleep disruption, and more.

If you're seeing my pain, I'm in so much pain I can't mask it anymore. You'd be at the ER long, long ago.

There's levels to this that normal folks cant even comprehend:

Daily chronic pain... I take lots of breaks and rest as much as I can and attempt to do my normal self care although it will be a much slower pace.
Major or new/confusing breakthrough pain.... I usually go to ground and do what I can to deal with and insomnia is worse.
Excruciating pain... I can cry silently until I pass out from exhaustion, barely existing, basic functions.
Others just don’t even know!

FLASH ALERT: "Finally Someone is Listening to People in Pain!" Now Live on the American Council on Science and Health...

The following landmark article has just been published on the American Council on Science and Health:

Finally, Someone is Listening to People in Pain!

[https://www.acsh.org/news/2024/07/30/finally-someone-listening-people-pain-48900](https://www.acsh.org/news/2024/07/30/finally-someone-listening-people-pain-48900)

"The Real Opioid Crisis in Three Charts": a patient advocacy group has briefed senior officials of the US FDA on major changes needed in public health policy for regulation of prescription opioid pain relievers and doctors who prescribe them. Perhaps now someone is truly listening to people in pain.

This will be re-posted widely today on social media platforms serving over 100,000 potential readers. Please share with your personal and professional networks! It will also be distributed to State Medical and Pharmacy Boards and Departments of Health, and multiple US and State government officials.

WE ARE A NATION IN PAIN AND WE WILL NOT BE SILENCED!

https://www.acsh.org/news/2024/07/30/finally-someone-listening-people-pain-48900

Finally, Someone is Listening to People in Pain! "The Real Opioid Crisis in Three Charts": a patient advocacy group has briefed senior officials of the US FDA on major changes needed in public health policy for regulation of prescription opioid pain relievers and doctors who prescribe them. Perhaps now someone is truly listening to people in pain.

I'd have a doctor who is willing to learn than one who thinks he knows it all, and gets offended if you know more about your condition than they do.

Finding a good doctor is NOT an easy task. Am I right?⁠
⁠
BUT if your doctor is willing to learn, then this is much less of an issue.⁠ There may not be a lot of fibro specialists — and there are a lot more people willing to learn.
⁠
I would honestly rather have a doctor who is willing to learn and doesn't know everything than one who thinks they know everything and isn't willing to learn — because the science is still continually changing.⁠ what we know about fibromyalgia changes. What we know about health changes!
⁠
Looking for more tips on finding a good doctor?⁠ That’s exactly what I cover in this week’s “Ask the Coach” episode.
⁠
Listen to Episode 140 of the Fibromyalgia Podcast® for free on my website at: FibromyalgiaPodcast.com/140
⁠
To subscribe or follow the podcast for free on your favorite podcast app, click here: FibromyalgiaPodcast.com/subscribe⁣⁠⁣⁠⁣⁠⁣⁠

I was 110 pounds when I first got sick. I was an athlete doing backflips off horses and camels, hauling 10 gallon buckets of water and 50lb bales of hay, working 18-20 hours a day, 7 days a week. No vacations, no holidays, no sick days.

It wasn't my weight!
It wasn't deconditioning.
It wasn't because I was soft or didn't know how to handle pain.

STOP 🛑 blaming fibromyalgia (and other chronic illnesses ) on weight
Click on to view in entirety

August's Virtual Meeting (initially scheduled for 8/1) has been rescheduled for next Friday, Aug 9th.

Rebecca is getting hit with a double whammy of a GI bug going around and a Migraine from the low air quality.

We apologize for the inconvenience. but we hope to see you next Friday night.

See the Meeting Reminder: https://gem.godaddy.com/s/2b934a1

Be sure to subscribe to our Meeting Reminders to get updates in your inbox. Subscribe at ==> https://bit.ly/DFCNewsletter

TikTok · Claudia A. Merandi 4183 likes, 637 comments. Check out Claudia A. Merandi’s video.

We just had to decline several requests to join the private Facebook group! 😢😭

‼️Please remember‼️
When asking to join the private Facebook group, you must answer all questions and accept the group rules that were automatically sent to you through Facebook Messenger when you requested to join.

This is how we keep the group safe and free of bots. 👌

Please request to join again, answer the questions, and we'll be happy to approve your request! ❤️🥰❤️ We can't wait to meet you! 🤗

👍Request to join at -->
http://bit.ly/DFCFacebookGroup

Watch now and learn what you need to know if you have ME/CFS when getting COVID boosters.

In "Covid Vaccinations: Efficacy, Options, & Special Considerations for Chronic Illness," Solve CSO Tim Hsiao, infectious disease epidemiologist Jessica Malaty Rivera, MS of Vaccinate Your Family & Bateman Horne Center's
Dr. Melanie Hoppers help people with ME/CFS, Long Covid, and other infection-associated chronic conditions make informed decisions about Covid vaccination.

https://www.youtube.com/watch?fbclid=IwZXh0bgNhZW0CMTEAAR1zYyMB0uiPPOvPPcWIips9TGty8VcIT83c2-NSHOYOMGYvMWskP969LJU_aem_tak7oMhZjukMUOmdnPc8Fg&v=xqTA4RPrj38&feature=youtu.be

Covid Vaccinations: Efficacy, Options, & Special Considerations for Chronic Illness People with chronic illnesses often have compromised immune systems or ongoing health issues that can affect how they respond to vaccines. The effectiveness ...

25 Physical Symptoms of Chronic Pain (That Aren't 'Just' Pain.

25 Physical Symptoms of Chronic Pain (That Aren't 'Just' Pain) "They are almost worse than the pain."

Looks like a good read.

We're live! Come join us!

In some of the chronic pain opioid groups, people are reporting being required to do "cognition" tests on a tablet at their visit. Has anyone in the group seen this yet?

When asked who is requiring this, who is aggregating the data, if this is part of a study, or if performing badly will be used to take away their meds - the offices have refused to answer, saying only that they have to monitor cognition.

My doctor makes me fill out a questionnaire each visit that asks if I'd been slow or manic that would make other people aware. But it's not a memory test like this.

Some reported having to take the exam in the lobby without earphones, so the entire lobby could overhear - surely a HIPAA violation.

It's asking questions that look at memory, etc. Repeat the alphabet or count backwards, etc. Remember three items. These are exams I did for SSDI and they determined then I had memory problems. But they weren't using the exam to point the finger at opioids.

Some report their insurance didn't cover it and were forced to pay out of pocket. Others report their doctors got paid a good amount by insurance for giving the exam.

Many patients expressed concerns. They informed their office they had other diagnosis that cause potential memory problems. One pointed out they already see a psychiatrist and other type of doctor who monitors this.

One reported they had an IEP in school long before she became ill for a problem with memory. Another showed they had a concussion years before their chronic pain that causes lasting memory problems.

They all reported the office didn't care.

Personally I've had several concussions that caused memory problems. I also have significant holes in my memories from the years they forced me to take Gabapentin and Lyrica rather than give me a therapeutic dose of opioids, and have had short term memory issues ever since. It has not gotten any worse since I stopped taking Gabapentin/Lyrica and have only been on opioids, but the damage from before was permenant.

Yet these cognition exams seem to only be looking at opioids as the only factor, ignoring other medications current or past, other diagnosises, other factors.

One reported being forced to take the exam at an appointment after working 3rd shift. Exhausted and awake not during their normal time, their cognition would obviously be affected. Again this was not considered.

Tonight's Virtual Support Meeting (Friday, June 7) is unfortunately CANCELED due to facilitators Robin and Rebecca being under the weather due to all the pollen We apologize for any inconvenience.

Since we were supposed to have a summer break in July, we'll switch the dates. June will be the summer break - and we'll see everyone in July.

Receive updates for Meetings in your inbox by subscribing to our Meeting Reminders list: https://bit.ly/DFCNewsletter

And get support between meetings through our private Facebook group, DFC Member Zone: https://bit.ly/DFCFacebookGroup

Are you trying to explain what ME/CFS is to someone close to you? Ask them to watch this video from the Bateman Horne Center.

Don't forget! May is Fibromyalgia and ME/CFS Awareness Month (May 12th is the official day). Make sure to spread awareness far and wide by sharing this post.

https://www.youtube.com/watch?v=vQWVZdGm508

What is ME/CFS? MEDICAL PROVIDER EDUCATION: **This video provides a basic introduction into the National Academy of Medicine's 2015 diagnostic criteria of ME/CFS.**In 2015, ...