The following information on the current pandemic is aimed at those with the rare endocrine diseases for whom we provide information resources and support services. It is from reputable sources such as the NHS and the World Health Organisation in conjunction with our own medical advisors and those of other organisations.
Beware of misinformation that is being spread on social media.
On this page, we bring together, and regularly review and update, the information currently available to us, so check back regularly.
As we continue to move out from lockdown after the horrific death toll of Winter of 2020/2021, it continues to be essential to follow the advice given out by the NHS which is detailed below.
Whilst the majority of people may have mild or no symptoms and do not require hospital treatment, the virus spreads easily (particularly the new variants), and can have a devastating effect on those who are more vulnerable.
We all need to do our bit to protect one another.
This page was reviewed on: 19/07/2021
The main symptoms of Coronavirus can include:
- A new, continuous cough
- A high temperature
- Muscle aches
- Gastric symptoms (e.g. Diarrhoea, pain)
- Nausea and/or vomiting
- Loss of, or change to, your sense of taste or smell
If you have any coronavirus symptoms:
Order a PCR test and stay at home (this includes children)
If you do not have any coronavirus symptoms:
Everyone should be routinely testing themselves approximately twice a week using the free testing kits available from the NHS. Follow the instructions carefully to ensure that the result is as accurate as possible. If your result is positive for covid-19, stay at home and order a PCR test to confirm the result.
Other Worrying Health Problems?
In all hospitals in the UK that are treating COVID-19 patients, arrangements have been made in a way so as to affect other services as little as possible, and to minimise the spread of the virus.
Therefore, if you have a concern about cancer or you are experiencing a health emergency, please contact your doctor or visit A&E as you would usually.
There has been a worrying (and unnecessary) drop in the number of referrals to cancer specialists during the pandemic. People with rare endocrine conditions are just as susceptible to other, more common cancers as the rest of the population. Therefore, if you notice any of the following symptoms, you should not hesitate to contact your GP:
- Blood in pee or poo
- Skin or breast changes
- Cough, heartburn or bloating for 3 weeks or more
- Out of breath more than usual
- If you have adrenal insufficiency (are steroid-dependent) and feel that you are approaching an adrenal crisis, increase your steroids according to ‘sick-day rules’ and go to A&E as normal.
- For any other emergency related to your condition, don’t hesitate to contact your doctor or go to A&E if it becomes serious.
COVID-19 in Endocrine Diseases
I have had Coronavirus. How can I help research?
AMEND ran a survey (closed from December 2021) for those with MEN syndromes who had had Coronavirus. The full results will be shared in due course, however, initial analysis confirms that people with MEN syndromes are no more likely to suffer with severe covid-19 than the general population.
AMEND also ran a project to map the emotional wellbeing of our MEN members during and after the pandemic. Surveys are run from time to time. Watch out for your chance to participate in on this topic from time to time.
C-19 ZOE app: this is a daily COVID-19 Symptom Tracker for the UK. It can be used daily (takes 1 minute) even if you feel well, and can arrange access to home testing if you report symptoms. Click here for more information.
Serco (NHS) Test & Trace App: Promised in June and finally released on 24 September, this app contains information about COVID-19, a facility to scan QR check-in codes, and will notify you to self-isolate if you have been potentially exposed to someone with the virus. You may need to update your smartphone to be able to use this app. Click here for more information.
What is long Covid?
Guidance for UK health workers describes long Covid as symptoms continuing for more than 12 weeks after an infection – severe or mild – and can’t be explained by another cause.
According to the NHS, symptoms include:
- extreme tiredness
- shortness of breath
- heart palpitations
- chest pain or tightness
- problems with memory and concentration (“brain fog”)
- changes to taste and smell
- joint pain
How AMEND can help if you're struggling emotionally
We have been working non-stop behind the scenes to ensure that we can bring you as many resources and support services as possible during this crisis.
If you are finding the going tough, why not look at one of the following:
- Join in with one of our online Patient Gatherings for a chat with others
- Check out the 6 Mindful Monday 10 minute sessions developed for us by Peter Berry
- Listen to our Lead Counsellor, Kym Winter, as she talks through ways to cope with anxieties around leaving lock-down
- Give our Counsellors a ring for a chat (free to members)
AMEND USA Resources
The Board and Medical Advisors of AMEND USA have developed a separate web resource dedicated specifically to the impact of COVID-19 on our rare endocrine disease community in the USA.
General Advice and Information
Local COVID-19 information update links:
- NHS England
- NHS Wales
- NHS Scotland
- NHS Northern Ireland
- UK Government Coronavirus website
- World Health Organisation Coronavirus website
- BBC News Coronavirus webpage
Fact-Checking of the Media:
- Get Legally Speaking – podcasts of UK lawyers answering questions (from employment to marital queries, including COVID-19 related issues)
- COVID-19 Scam Checker – Find out about coronavirus scams and how to avoid them (US-based site)
- C-19 ZOE app: this is a daily COVID-19 Symptom Tracker for the UK. It can be used daily (takes 1 minute) even if you feel well, and can arrange access to home testing if you report symptoms. Click here for more information.
- Serco (NHS) Test & Trace App: Promised in June and finally released on 24 September, this app contains information about COVID-19, a facility to scan QR check-in codes, and will notify you to self-isolate if you have been potentially exposed to someone with the virus. You may need to update your smartphone to be able to use this app. Click here for more information.
- Relationship help: The Citizen’s Advice Bureau have reported that web searches about divorce peak on a Sunday. Overall, the divorce rate is soaring above average during the pandemic. There are many reasons why this might be happening, but many believe that the length of time we’ve been spending together in close proximity is probably the reason. Here are some useful resources:
- Financial Help: For members of AMEND, ACC Support and Phaeo Para Support, our Hardship Fund may be of use to you. In addition, financial or other help may be available from the following sources:
- Turn2Us – A national charity helping people when times are tough
- The Trussell Trust – A national organisation fighting hunger
- Step Change Debt Charity – impartial debt advice
- Foot Aid Network – network of independent food banks in the UK
- Cheap Family Meals – how to make meals for under £1 per head
- Citizen’s Advice Bureau – advice on a huge range of issues
- Money Advice Service – free and impartial money advice
- Our Financial Advice page may be useful
- Food Banks: You can get a food bank voucher from a front line professional, such as a doctor, social worker, adviser at Citizens Advice Bureau or police. Your nearest Citizens Advice can often refer you if you do not have contact with the police, doctor or a social worker.
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