Collected information following our recent long Covid webinar. If you would like to stay informed about future events please subscribe to our email newsletter. We send approximately one email per month and do not share your email address with anybody else.
Useful Links
SIGN patient booklet
The national guideline in an easy to read, patient facing format: https://www.sign.ac.uk/media/1894/long-covid-patient-booklet-2021-update-final.pdf
NICE/SIGN/RCGP guidance
The national guidance: https://www.nice.org.uk/guidance/ng188
Long Covid SOS
Patient facing support and advocacy: https://www.longcovidsos.org
Your Covid Recovery
Nationally approved website for advice and information: https://www.yourcovidrecovery.nhs.uk
If you have been diagnosed with Postural Tachycardia syndrome
PoTS UK: https://www.potsuk.org
If you are having trouble sleeping
https://www.nhs.uk/every-mind-matters/mental-health-issues/sleep/
Scottish Ballet and Scottish Ballet Emerge (with movement exercise videos)
https://www.scottishballet.co.uk
https://www.scottishballet.co.uk/join-in/sb-health/emerge
Here are some answers to questions we missed on the day. As we explained, we are unable to give individual medical advice but can provide generic advice.
Blood pressure concerns
Anyone with concerns about their blood pressure should visit with GP surgery in a routine appointment to ask for it to be reviewed. Taking along a daily recording for 1 week can be really helpful for your GP and their team and may speed up the process of assessment.
You can buy blood pressure machines and measure it at home, or visit a community pharmacist who are often able to test your blood pressure for you.
Postural tachycardia syndrome
If diagnosed with postural tachycardia syndrome- which your GP surgery can do using a simply test of your heart rate and blood pressure during a routine appointment- simple treatment includes increasing fluid and salt intake. However, it is important to note that if you have high blood pressure, salt is often not recommended. If you are concerned, ask your GP surgery about this in a routine appointment. You may find it helpful to take the PoTsUK website factsheet with you in case your GP team is not aware of this diagnosis to help you.
Other causes of post viral syndrome
Other conditions can cause post viral syndromes which may lead you to have multiple symptoms such as being tired, fatigued and have suffer with brain fog. The current evidence available states that the different causes are not linked to long covid. This includes glandular fever and Lyme disease. As more evidence emerges, this will of course be reassessed. Your GP team may recommend similar treatments as for those with long covid such as pacing and clean sleep as these are treating the symptoms you have and not the cause of those symptoms.
Other causes of fatigue
For conditions such as ME/CFS and fibromyalgia that also cause fatigue, the current evidence suggests that they are not the same condition as long covid, but in many cases do have similar symptoms such as fatigue and brain fog. As more evidence emerges, this will of course be reassessed. Your GP team may recommend similar treatments as for those with long covid such as pacing and clean sleep as these are treating the symptoms you have and not the cause of those symptoms.
Funding support
Please see the BAPAM funding factsheet for help: BAPAM-Factsheet_Financial-and-Practical-Support.pdf
Psychological support
Long covid is not a mental illness, but you may need some support.
Whilst Long covid is not a mental illness, it can impact on our wellbeing, how we sleep and how we live our lives, which can then have an impact on how we cope and adjust to living a different life whilst not being able to perform to the standard we are used to whilst unwell.
If anyone feels that they are struggling to cope or adapt to long covid, BAPAM can offer an assessment for mental health support.
If you would like support form a psychological perspective, please contact the helpline on 020 8167 4775 we will then send you a mental health assessment form and if funding is approved, could offer you 1:1 or group support to help with the difficulties of performing and holding down a freelance career whist struggling with the long term effects of long covid.