ME/CFS

• 11,813,279 and 11,813,281 for Ampligen® titled “Compositions for cancer therapy and methods,” and “Methods for improving exercise tolerance in myalgic encephalomyelitis patients,” respectively.
• AIM Chief Executive Officer Thomas K. Equels stated: “Our ongoing effort to expand and solidify AIM’s global intellectual property estate is a foundational component of our development strategy for Ampligen.
• The combination of these compounds is designed to work synergistically to enhance the effectiveness of the treatment.
• This exclusivity fortifies AIM's position in the market by enabling development of a distinctive and unparalleled treatment option.

• Kristin succeeds Oved Amitay, who served as President and CEO from June 2020 to October 2023.
• A passionate patient advocacy leader and a member of Solve's Board of Directors, Kristin Jacobson brings a wealth of experience and expertise to her new role.
• Solve Board Chair John Nicols expressed his enthusiasm for Kristin's appointment, stating, "We are thrilled to have Kristin Jacobson take the helm as our new CEO.
• As the incoming CEO, Kristin Jacobson is poised to lead Solve into an era of continued growth, innovation, and progress.

• Since contracting COVID in March 2020, Lucy told us she had been struggling with relentless fatigue, joint pain, breathlessness, brain fog and sensory dysfunction.
• But worse than any single symptom is how this leaves her feeling about her own identity.
• She said she found herself unrecognisable, a shadow of the person she used to be:
  This isn’t who I am – I don’t recognise myself.
• My fear is I’ll never really get better, and that I’m always going to be at 70% of my former self.
• It’s like I can’t picture myself any more in the same way [that I used to], on an upward trajectory.

Are existential crises common?

• Strikingly, while sharing their experiences of living with these symptoms, more than half described a profound and, to them, often inexplicable anguish.
• This emerged as they were forced to question their purpose, even their very existence, in the face of long COVID.
• Yet there still appears to be only a limited understanding of the way that people experience full-on existential crisis – including among those family members and friends closest to them.
• Existential crises can also centre around experiences such as a romantic break-up or bereavement, or even the global threats posed by climate change.

Losing your identity

• The aftermath of their infection typically resulted in a wide range of symptoms affecting their breathing, heart and cognitive function.
• I found it a little bit hard to adjust to – like I’d lost my identity slightly.
• I found it a little bit hard to adjust to – like I’d lost my identity slightly.

Mourning the loss of physical capabilities

• Drawing parallels between his loss and the amputation of a limb, Lewis suggested both experiences could result in a profound loss of identity in which “all sorts of pleasures and activities that I once took for granted will have to be simply written off”.
• In this way, Lewis said, his “whole way of life will be changed”.
• Their emotions were often raw and intense as they confronted not only loss of their former identity and lifestyle, but control of their body.
• This may help explain how loss of control of the body can give rise to a form of grieving.
• The painful aspect of grief arises from the ruptures it creates in our lives.

Fear of an uncertain future

• Our participants faced daily struggles not only with the grief of losing their cherished past but fear of their uncertain future.
• Life can be likened to the crafting of a book, with each scene gaining significance only when seen within the context of its broader narrative.
• Finding coherence in our life stories is crucial to maintaining meaning and purpose, and building a buffer against the challenges of day-to-day life.
• But for many, long COVID has disrupted this narrative, leading to a profound realisation of their vulnerability and mortality.

Suffering in silence

• Many of our interviewees found it easier to articulate the surface-level challenges they faced, while struggling to convey the nuanced experiences of their deeper suffering.
• In part, this may be because our society lacks the appropriate vocabulary to capture such profound and wide-ranging pain.
• She felt there was “no point really talking about it as I could tell it’s upsetting for people to hear”.
• John, 63, said he found it challenging to communicate his “hidden disability” and associated suffering because he was “not in a wheelchair” and didn’t have “a plaster cast on my hand”.
• I had already taken a six-week sicknote and couldn’t take any more, because my financial position was very weak.

We need to talk about existential concerns

• When considering coping strategies, we believe it is essential to promote a better understanding of the prevalence of existential crisis among society as a whole.
• Not everyone, of course, can access highly specialised support such as existential therapy, which can be a useful tool for confronting existential dilemmas and gaining insight into values and beliefs.
• What’s needed is a more accessible way to directly address and discuss our existential worries.
• A European research project has created a programme to help healthcare professionals engage in existential conversations more sensitively and confidently.
• *All names have been anonymised to protect the interviewees’ identities For you: more from our Insights series:
• Chao Fang received funding from UKRI and NIHR (COV-LT-0009) for the study reported in this article.
• JD Carpentieri received funding from UKRI and NIHR (COV-LT-0009) for the study reported in this article.

• Emerging from stealth with thousands already engaged in its Long Covid group, the AI-powered platform added metabolic disease, autoimmune disorders, ME/CFS, and related conditions.
• Funds will be used to build and grow the community, expand its treatment database, and ultimately influence and advance treatment research.
• Drawing on their deep backgrounds in engineering and product development, as well as their personal experiences, the Eureka platform came to life.
• "With Eureka, patients have a platform to exchange data and rare experiences with others, giving them a community in times when they need it the most."