UK: NeuroLifeNow: regular surveys of people with neurological conditions

[Andy]

Who are we?

NeuroLifeNow was launched in January 2021 as a vehicle for change. Through the innovative web-based technology, we have captured real-time evidence from people across the UK about the stark realities they face accessing treatment, support and care for their neurological condition(s). NeuroLifeNow is a research platform that unifies and amplifies your voice to drive improvements that could transform the lives of millions.

NeuroLifeNow is a social research platform owned by national charity, The Brain and Spine Foundation who collaborate with the Neurological Alliance of England to influence UK Governments and decision makers. We are tired of people with neurological conditions not getting the support they need. By coming together we can help to change that faster.

https://neurolifenow.org/about-neuro/


To take the latest survey, which asks about the impact of the cost of living crisis on you as well as your recent experiences with the medical system, https://neurolifenow.org/surveys/

 

[alex3619]

Does anyone know if they consider those with ME to be eligible?

 

[Andy]

Does anyone know if they consider those with ME to be eligible?

Participants can select either Myalgic Encephalomyelitis or Chronic Fatigue Syndrome as a condition they have.

 

[livinglighter]

Participants can select either Myalgic Encephalomyelitis or Chronic Fatigue Syndrome as a condition they have.

Glad to hear this, but recently the staff at The Brain and Spine Foundation told me ME/CFS is FND even though the condition is mentioned on their site.

https://www.s4me.info/threads/funct...media-and-discussion.23802/page-5#post-426319



[Edited: to include a link to the overview conversation with the charity]

 

[NelliePledge]

Glad to hear this, but recently the staff at The Brain and Spine Foundation told me ME/CFS is FND even though the condition is mentioned on their site.

I think if you’re able to email it would be worth informing AFME and MEA and asking them to take this up with the BSF people.

 

[livinglighter]

I think if you’re able to email it would be worth informing AFME and MEA and asking them to take this up with the BSF people.

Will do, it's on my lengthy to-do list. I have more planned correspondence with the charity so I will point out that the condition is recorded as neurological on SNOMED CT and accepted by NHS England.

I'll make a new post once done.