Finding fulfilment while living with fatigue

Happy Wednesday! We hope you’re having a restful week.

🌼 Embrace some mid-week self-care and join our free event today at 6:30PM BST with Pippa Stacey, on the theme of finding fulfilment when living with fatigue. Pippa is an award-winning writer, speaker, and communications consultant from Yorkshire, England, and has lived with ME/CFS for 10+ years. For the past three years she has been named in the prestigious Disability Power 100 as one of the most influential disabled people in the UK. 

📅 Sign up for Pippa’s talk here.

🌟 Member Spotlight

👩‍ Read our first member interview with Sabina, who spoke candidly about her experiences with severe ME/CFS.

Thank you for being a NURA Community member ❤️ 

NURA’s aim is to make the lives of people with Long COVID and ME/CFS a little brighter. We do this by bringing members useful, reliable and informative content, hosting supportive check-ins and interesting events and, most importantly, giving people a dedicated space to build meaningful connections with others who understand. 🤝

Although NURA Community started out just a few months ago, it’s been buzzing with activity so far. If you jump straight in and start reading some of our posts and conversations, you’ll soon find your way around.

💬 To get you started, here are a few recent conversations on pacing:

Pacing with Visible (activity tracking app for energy-limiting conditions)

What tips and tricks help you pace?

Does anyone else find pacing totally unmanageable?

My Feed in the left sidebar shows you all posts and conversations from spaces (these are the individual community groups listed in the left sidebar) you’ve joined. As the community is still growing, we auto-enrol members into all spaces, but you can easily leave a space by clicking on the three vertical dots next to the name of the space, and selecting “leave space”.

🎈 If you’ve just joined NURA Community and are still finding your way around, our welcome video should help.

📰 Article Spotlight

👨‍⚕️ With no cure yet for Long COVID, people with the illness are trying to change how research and clinical trials are done. “We’re driven by desperation, out of improving our own quality of life.”

• The article highlights the pivotal role that Long COVID patients have played in driving forward research into their condition.

• Patient-led initiatives, such as Patient-Led Research Collaborative (PLRC), is one example. Through their advocacy and collaborative efforts, patients like Lisa McCorkell have made significant strides in documenting and comprehensively addressing the myriad symptoms experienced by people with Long COVID.

• The PLRC’s survey of Long COVID symptoms was the first major research study of the condition and is considered a seminal work in Long COVID research, amassing over 1000 citations. “The achievement is especially notable considering that the study was conducted by unpaid volunteers, most of whom identify as disabled, and it received no financial support. By contrast, many Long COVID research initiatives have tended to focus on a subset of symptoms, which comes with the risk of missing the bigger picture, says McCorkell.”

• Another example is Martha Eckey's TREAT ME survey, which has empowered people with Long COVID and ME/CFS to actively contribute to research. The survey asked patients about their experiences, including whether they had tried any of a list of 150 medicines and supplements.

• Despite the unavoidable biases of surveys, by harnessing the collective experiences of the community, TREAT ME has attracted the attention of scientists and research foundations, who realised the potential of this information; one was the Open Medicine Foundation (OMF), a non-profit organisation in California that studies infection-associated chronic illnesses like Long COVID and ME/CFS.

• The OMF’s first double-blind, randomised, placebo-controlled clinical trial will explore low-dose naltrexone (LDN) and another drug, pyridostigmine (mestinon). Linda Tannenbaum, the OMF’s founder, credits TREAT ME for helping to shape which symptoms will be assessed during the trial. “The reason we are doing LDN as our first trial is that patients asked for it.”

• Clinical trials are essential to demonstrate the safety and effectiveness of medicines, and give patients access to them. Both LDN and pyridostigmine have been used off-label to treat Long COVID, but doctors are often reluctant to prescribe them because of a lack of formal, randomised, controlled trials showing their effectiveness. Many patients report that insurance companies also won’t pay for these medications for people with ME/CFS and Long COVID without strong evidence to support their use.
  

📊 Research Spotlight

🔍 The UK's largest Long COVID study, led by Imperial College London, followed up 650 hospital patients with severe COVID.

Six months later, 426 said they still had at least one Long COVID symptom. These 426 people showed evidence of a continuing and active pattern of inflammatory proteins in their blood.

The researchers said the presence of these chemicals in the blood, which are usually a sign of the body fighting off infection, was unusual when the initial infection occurred so long before.

🛠️ Some helpful things

From us:

From others:

That’s it for now! Until next time.

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