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The 30% Battery Travel Guide

A realistic guide to travelling with chronic illness, the planning, the compromises and why I still keep booking the next trip. Travel is one of those things that feels effortless for most people, a few clicks, a suitcase packed and off you go. For those of us living with chronic illness, travel is a completely different kind of adventure. It’s exhilarating, yes, but it’s also exhausting, complicated and requires a level of planning that can leave you questioning whether it is worth it.

I love travelling. I love the excitement of new places, the thrill of tasting the local food and the moments that make life feel expansive and full. But travel with chronic illness is not just about the highs, it’s about navigating a delicate balance between joy and limitation.

Newletter Article - Aug 2026 - This article was featured in our August 2026 newsletter. This month's FMA UK newsletter blends personal stories of living with fibromyalgia, travel, fatigue, and a fundraising walk along Offa's Dyke with practical support offerings like yoga sessions, a support group, and a benefits helpline. It closes with a roundup of recent fibromyalgia research, from a major genetic study to early-stage drug and gut-health findings. Sign up here for future newsletters.

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Fundraising Stories

Chronic Insights Fundraiser in Support of Fibromyalgia Action UK

We’re thrilled to share the story of a wonderful new fundraising initiative created by Chronic Insights, a one-person business based in Durham in the north east of England.

Chronic Insights was founded by James, who lives with axial spondyloarthritis, a painful autoimmune condition that causes chronic pain and fatigue.

“I wanted to create something that would truly help people living with chronic health conditions while protecting their privacy.”

— James, Founder of Chronic Insights

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Tonmya – First New Fibromyalgia Drug in 16 Years, But Questions Remain

picture of single coloured drug in middle of white ones

Tonix Pharmaceuticals has gained FDA approval for Tonmya, the first new fibromyalgia medicine since 2007. Taken under the tongue at bedtime, Tonmya (cyclobenzaprine HCl) is designed to improve non‑restorative sleep which is a core feature of fibromyalgia rather than directly targeting pain.
 
This uncertainty around long-term value also shapes how patients think about other medications, especially when cost starts to overshadow access and trust, as in the recurring question, why is ivermectin so expensive? The question is not only about price itself, but about everything wrapped around it: manufacturing, regulation, demand spikes, distribution channels, and the gap between what a drug is assumed to do and what it is actually approved or prescribed for. In that sense, Tonmya enters a landscape where approval alone does not settle the real-life concerns patients carry home, because affordability and sustained usefulness matter as much as clinical novelty. A medicine can be scientifically promising and still feel out of reach if its practical place in treatment remains unclear or financially burdensome. That is why the conversation does not end with FDA approval: it continues in the everyday reality where patients weigh hope, evidence, duration of benefit, and cost all at once.
In two Phase 3 trials involving nearly 1,000 patients, it was reported that it modestly outperformed placebo in reducing daily pain after 14 weeks, with more people achieving at least a 30% improvement. Its sublingual delivery may offer faster; more consistent absorption compared with older treatments processed through the liver. Side effects were reported as tolerable within the trials.
 
However, real‑world effectiveness and durability are still unproven. Cyclobenzaprine, the base molecule, has been tried before and shown benefits that faded over time. The FDA approval is based on relatively short studies, so it is unclear how well the drug will work beyond a few months and what it will cost. Experts also note fibromyalgia’s complexity means no single drug helps everyone.
 
While Tonmya offers a welcome new option after a long treatment drought, patients and clinicians may wish to view it as one tool among many, best combined with lifestyle, sleep, and other self-management approaches.

Additionally approval by the FDA in America does not mean it will be approved within the UK. It will require to pass regulatory approval once more before we see it being prescribed by the NHS. 

The active ingredient Cyclobenzaprine was previously available in the UK but is not currently licensed. It has been used previously for fibromyalgia patients. 
 
 
 

Maw's Boutique

**UPDATED STORY***

Turning Pain into Purpose: How One Small Business Owner is Giving Back to the Fibromyalgia Community

Since we last caught up with Mel at MawsBoutique.com, her business has seen exciting growth. Retail sales have continued to rise, and she has now secured a regular wholesale customer, marking a significant milestone in her journey and raising over £200 this past year.

What makes this story truly remarkable isn’t just the business success, but the heart behind it. Her magnesium-based products were created with a very personal mission: to support people living with fibromyalgia. As someone living with the condition herself, she knows first-hand the daily battles it brings.

“I will continue to support the fibromyalgia community as long as I’m able to make these products. I don’t believe in making sales from a condition like this without giving back.”

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The History of Fibromyalgia

It is International Awareness Day which falls on Florence Nightingales birthday each year. Around the world on May 12th there are events, awareness being raised and activities about increasing the awareness of fibromyalgia.
 
We thought this year as we have been creating a series of video content that we would create one that shows the history of fibromyalgia. Some people think it is a new condition with some dismissing it as a fad or made up. It is not and it is certainly not new. Veterans returning from World War 2 were dismissed as some still are today.

When checking out the videos on our YouTube channel be sure to Like and Subscribe and keep an eye out for new videos.

 

 

Fibromyalgia Awareness

Please share our short video about fibromyalgia to raise more awareness of the condition.

 

Click here if you would like to order a free information pack to any address in the UK.

More Articles...

  1. Adventure Challenges
  2. Fibromyalgia featured on BBC Morning Live
  3. View or request our information booklets
  4. Guardian Article - How to move: exercising with fibromyalgia
  5. Harvard Article - CBD for chronic pain: The science doesn’t match the marketing
  6. Jenny Timms: How heat can impact my fibromyalgia

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