Here’s why we are asking for your support to call for funding for research on behalf of all those with unmet needs who suffer from this insufficiently understood, under-recognised and highly incapacitating health condition.

Patients with Postural Tachycardia Syndrome (PoTS) have an abnormal response by their autonomic (or automatic) nervous system to basic tasks such as standing up.  This simple act can cause palpitations, dizziness, and disabling fatigue.  Patients living with PoTS experience range of other incapacitating symptoms including brain-fog (difficulty thinking) chest pains, nausea, diarrhoea, chronic headache, and sleep problems. 

 PoTS is described as an ‘invisible illness’ because you cannot tell by looking at someone that they are unwell, and it is not picked up by standard tests like blood tests.  However, the effect on a patient’s quality of life is enormous and equivalent to conditions like congestive heart failure.  In a sense it is also invisible because patients who have it often become invisible members of society, bed-bound or wheelchair users (23%), with 50% of sufferers needing prolonged time out from schooling or work. PoTS often starts in young-adulthood.  Critical educational, relationship and career opportunities can be lost during the 6 years it typically takes currently from symptoms starting to getting help.  We do not know exactly how many people in the UK have PoTS – but numbers are likely to be high enough that at least one or two people that you know in your community will have PoTS.

We call PoTS  ‘the most common health-condition you have never heard of’.  Even many healthcare professionals do not know about PoTS.  If it seems extraordinary and unacceptable that so many people can suffer such difficult symptoms without proper understanding or help – please act and sign this petition.

People with PoTS will improve once they are diagnosed and offered treatment, but finding the right treatment for each individual can involve trial and error of different lifestyle changes and medicines over a number of years. With more research we are confident that we can do even better.  In the last year, laboratories have discovered exciting and hopeful signs for new and novel treatments.  However, this has been on a very small samples and we need to ensure this rapidly turns into real-world research with much larger patient numbers to understand PoTS better and ‘what works best for whom’.

Currently the Dept. of Health via the Medical Research Council is funding research projects which helps identify sub-groups of patients within a condition to target therapies that work for the right patients.  We want to ensure that PoTS gets included in this, which is why we urgently need you to show your support for this now.

…And of course hope and help cannot come too soon for the thousands of patients currently struggling with this disorder.

 This is not a hopeless situation, just a neglected one. Thank you for your time and support in urging funding to be placed toward much-needed research for PoTS.