Found: The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos

Found: With regards to food, I suffer from intolerances and allergies, which is known as Mast Cell Activation Syndrome

Found: Syndrome (PIMS-Ts), Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) or Mast Cell Activation Syndrome

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to improve (a) diagnosis and (b) treatment pathways for patients with (i) hypermobile Ehlers-Danlos Syndrome, (ii) Postural Orthostatic Tachycardia Syndrome and (iii) Mast Cell Activation Syndrome.

Answered by Andrew Gwynne

The Government is committed to improving the lives of those living with rare diseases, such as hypermobile Ehlers-Danlos syndrome (hEDS) and mast cell activation syndrome. The UK Rare Diseases Framework sets out four priorities, collaboratively developed with the rare disease community, which include helping patients get a final diagnosis faster and improving access to specialist care, treatments, and drugs. We remain committed to delivering under the framework and will publish an annual England action plan in 2025. With over 7,000 identified rare diseases, the framework and action plans focus on shared challenges across all rare diseases.

NHS England has a website page on hEDS and this notes the passing of information on to the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS) to help scientists look for better ways to prevent and treat this condition. NHS England’s website page is available at the following link:

https://www.nhs.uk/conditions/ehlers-danlos-syndromes/

Be Part of Research is a tool that can support people living with rare diseases in engaging with research. Currently on Be Part of Research there is a study recruiting those with hEDS to take part in research to help advance the understanding of diagnostic imaging in this condition. Further information is available at the following link:

https://bepartofresearch.nihr.ac.uk/trial-details/trial-detail?trialId=24730&location=&distance=

To improve awareness of postural orthostatic tachycardia syndrome (PoTS) amongst healthcare professionals, and specifically general practitioners, the Royal College of General Practitioners provides training on PoTS as part of its syncope toolkit. Further information is available at the following link:

https://elearning.rcgp.org.uk/course/view.php?id=500

In addition, the NICE has produced a clinical knowledge summary on blackouts and syncope, last updated in November 2023, which outlines how clinicians should assess and diagnose PoTS. The NICE’s clinical knowledge summary is available at the following link:

https://cks.nice.org.uk/topics/blackouts-syncope/diagnosis/assessment/

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether the NHS has commissioned research into the potential impact of (a) Covid-19 and (b) Covid-19 vaccines on the (i) diagnosis and (ii) treatment of Mast Cell Activation Syndrome.

Answered by Will Quince

The Department commissions research through the National Institute for Health and Care Research (NIHR). Vaccines must be tested in a wide range of studies, including clinical trials to establish their efficacy and safety, and have a product licence, known as a “marketing authorisation” before they can be made available for widespread use in humans. Since the start of the COVID-19 pandemic, the NIHR has allocated over £110 million in funding for COVID-19 vaccine research that has included consideration of vaccine safety and robust monitoring of adverse reactions to COVID-19 vaccines.

The NIHR welcomes funding applications for research into any aspect of human health, including vaccine side effects.

As someone affected by MCAS challenges, including misdiagnosis, limited awareness, and medication access, I urge government to fund activities to enhance awareness, increase research funding, support medication access and collaborate with patient advocacy to support a patient-centric approach.

Found: Fund increased care and support for people with Mast Cell Activation Syndrome

I urge the Government and Parliament to prioritise the inclusion of Mast Cell Activation Syndrome (MCAS) in the official list of recognised conditions by the National Institute for Health and Care Excellence (NICE).

Found: I urge the Government and Parliament to prioritise the inclusion of Mast Cell Activation Syndrome (MCAS

Mast cell activation syndrome (MCAS), Postural tachycardia syndrome (PoTS), Ehlers-Danlos syndromes (EDS) are chronic conditions that can be debilitating. However, too many people with these conditions don't receive the support they need. We want increased funding for research and patient care.

Found: Mast cell activation syndrome (MCAS), Postural tachycardia syndrome (PoTS), Ehlers-Danlos syndromes (

Found: For services to Charitable Fundraising for Mast Cell Activation Syndrome Lancashire Lancashire Order

Found: Coagulopathies Antiphospholipid syndrome 1 0 Haematological disorders Mast cell activation syndrome

Found: disorders Eosinophilia 1 0 Haematological disorders Blood disorder 1 0 Mast cell activation syndrome

Found: Mast cell activation syndrome Germa ny Spontaneous (medically unconfirmed) This is a spontaneous

Found: displayed in Long COVID patients, such as ME/ CFS/ Post-V iral Fatigue Syndrome (PVFS) / Mast Cell Activation Syndrome