UK House of Lords/ House of Commons Questions

[Tao Fogger]

A debate on POTS took place in Westminster Hall yesterday.

Cat Smith Chair, Procedure Committee, Chair, Procedure Committee ​

I beg to move,

That this House
has considered the matter of support for people with postural tachycardia syndrome.

It is a pleasure to see you in the Chair this morning, Sir Desmond. I am grateful for this opportunity to look at a health issue that is often overlooked, misunderstood and under-resourced within our national health service: postural orthostatic tachycardia syndrome, or PoTS for short. It is not a rare disease, yet for too long people living with PoTS have fallen through the cracks of a system that was never designed to recognise or support them. My notes are based on the heartbreaking reality faced by my constituents and the tens of thousands of people across the UK who have PoTS. I must declare, Sir Desmond, that I have had a diagnosis of PoTS since 2012, so some of what I will say is taken from my own experience as well.



Both ME and Long Covid were mentioned. The full debate can be read here: https://www.theyworkforyou.com/whall/?id=2025-10-14a.56.0

 

[Cinders66]

“Establishing a research hub for ME/CFS would not provide the same level of flexibility”

“Establishing a research hub for ME/CFS would not provide the same level of flexibility”

When Tom Morrison MP tabled a Written Question (UIN 72045) to the Department for Health and Social Care on "how much funding his Department has allocated for Myalgic encephalomyelitis research in each of the last five years" the long in words but short on figures and specifics from Ashley Dalton...

www.meresearch.org.uk

When Tom Morrison MP tabled a Written Question (UIN 72045) to the Department for Health and Social Care on “how much funding his Department has allocated for Myalgic encephalomyelitis research in each of the last five years” the long in words but short on figures and specifics from Ashley Dalton MP, Parliamentary Under-Secretary of State for Public Health and Prevention did provide an albeit disappointing piece of insight into government thinking (emphasis added by ME Research UK).

The NIHR welcomes funding applications for research into any aspect of human health and care, including post-acute infection conditions such as ME/CFS, and research funding is available. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. Welcoming applications on ME/CFS and other post-acute infection conditions to all NIHR programmes enables maximum flexibility both in terms of the amount of research funding a particular area can be awarded, and the type of research which can be funded. Establishing a research hub for ME/CFS would not provide the same level of flexibility. The NIHR Academy offers extensive support for early-career researchers through various fellowships, training awards, and mentoring structures. For instance, through the INSIGHT Programme, they work with universities to fund research masters studentships and attract students into research. Through Academic Clinical Fellowships, for doctors and dentists, and Predoctoral Academic Fellowships, for other health professionals, the NIHR Academy supports healthcare practitioners in integrating research with clinical practice.

Welcoming applications has delivered a p*** poor level of progress over twenty years for some of the sickest people in the country, harmed by the nhs itself. The fact they feel they can turn down models that they themselves have funded for other areas, with such flimsy excuses and lame alternative, shows what a walkover they regard the m;e sector, which if it were a person would be getting recommendations for assertiveness training