If you’re identified as being extremely vulnerable and at the highest risk level, you will be contacted by the NHS by Sunday 29 March 2020. Do not contact your GP or healthcare team at this stage – wait to be contacted.

People with MEN syndromes, SDH syndromes, MTC and ACC are at no greater or lesser risk than the rest of the population of contracting coronavirus, unless they have a reduced immune response due to any of the following;

• have had an organ transplant
• are having certain types of cancer treatment
• have blood or bone marrow cancer, such as leukaemia
• have a severe lung condition, such as cystic fibrosis or severe asthma
• have a condition that makes you much more likely to get infections
• are taking medicine that weakens your immune system
• are pregnant and have a serious heart condition
• People who don’t wash their hands and who touch their face

People with adrenal insufficiency (steroid dependence) or diabetes, may have a slightly increased risk of contracting the virus and more likely to need intervention if they catch the virus.

Patients with adrenal insufficiency are:

• Strongly advised against social mixing in the community
• Strongly advised against having friends and family to the house
• Strongly advised to use remote access to NHS and essential services
• Strongly advised to vary daily commute and use less public transport
• Strongly advised to work from home​

View the full, current list of high risks and advice here [external link]

There is currently no data on how coronavirus will affect anyone with MEN syndromes, SDH syndromes, MTC and ACC.  What we do know is that the virus has a severe effect on people who:

• are receiving active treatment for cancer (such as radiotherapy, chemotherapy, and so on)
• are on high dose steroids or have active and uncontrolled Cushing’s Disease
• have heart disease
• have a lung disease (such as severe asthma, COPD, cancer lung metastases, and so on)
• who are aged 70 or over with an underlying health condition (as described above)

People with the following, may experience an increased risk of severe illness:

• adrenal insufficiency
• diabetes

AMEND is running a questionnaire for people with rare endocrine diseases and will be sharing results from this from time to time.

If you’re identified as being extremely vulnerable and at the highest risk level, you will be contacted by the NHS by Sunday 29 March 2020. Do not contact your GP or healthcare team at this stage – wait to be contacted.

MEN syndromes, SDH syndromes, active MTC and ACC are classed as ‘underlying’ or ‘pre-existing’ conditions/diseases, but are not thought to be at a higher risk than the general public.  However, adrenal insufficiency (from adrenal or pituitary surgery), diabetes or cancer metastases (especially to the lungs) may result in an increase in the risk of a severe infection response.

The advice for everybody now is to STAY AT HOME unless you are an essential worker.  If you are high risk and need to ask your employer to let you work from home you can get an Isolation Note here.

Make sure that you:

• check that your medicines are not out of date
• have sufficient supplies of your regular medicines (contact your GP if necessary to order extra and ask the pharmacy to deliver)
• have enough groceries to last a few weeks and that you have someone who can deliver anything else to your front door

The current edict from the UK government is for everyone to STAY AT HOME.  Do not go out if you have symptoms.  Even if you don’t have symptoms and are not high risk, people may only go out for essential supplies (food/medicine) or for one period of exercise per day (walking, running or cycling only).

Even when self-isolating:

• wash your hands regularly with soap, and
• do not touch your face

If you’re identified as being extremely vulnerable and at the highest risk level, you will be contacted by the NHS by Sunday 29 March 2020. Do not contact your GP or healthcare team at this stage – wait to be contacted.

The main symptoms of Coronavirus can include:

• A new, persistent, dry cough
• A high temperature
• Muscle aches
• Gastric symptoms (e.g. Diarrhoea, pain)
• Nausea and/or vomiting
• Headache

If you think you have Coronavirus, self-isolate at home (in a separate room to others in the household) for 7 days immediately.  If you live with other people, they should stay at home for 14 days from the day the first person got symptoms.  If you live with someone who is 70 or over, has a long-term condition, is pregnant or has a weakened immune system, try to find somewhere else for them to stay for 14 days.  If you have to stay at home together, try to keep away from each other as much as possible.  You can consult the online NHS 111 service for more advice. [external link]

Do not go to your GP surgery or pharmacy.  You do not need to telephone NHS 111 to tell them.  Testing for the virus is not done if you are able to stay at home.

Adrenal Insufficiency:  if you have symptoms, apply the ‘sick day rules’ immediately.  That is; double your oral dose of corticosteroid (hydrocortisone, prednisolone, etc).  If you become suddenly worse or are struggling to breathe and cope at home, give yourself your emergency injection of hydrocortisone and contact the NHS 111 Coronavirus Service [external link]

• The ADSHG have more information on this here [link]
• The Pituitary Foundation have more information on this here [external link]
• The Society for Endocrinology have more advice here [PDF Download]

Receiving Treatment for Cancer (excluding levothyroxine for thyroid cancer):  You should be notified of any changes to your usual treatment routine.  If you have not heard from them and have treatment due, please contact the appropriate department as soon as possible.

• There is more information for people with cancer here [PDF download]

For more information on staying at home click here

AMEND is running a survey for those with MEN who have had Coronavirus.  This can be completed by anyone with MEN1, 2A & 2B who has recovered from COVID-19, or by a clinician or family member of someone with MEN who has sadly died as a result of COVID-19.  Thank you for participating to help others.

Click here to take the survey

Surveys for those with other rare diseases coming soon

Guy’s & St Thomas’s Biomedical Research Centre and others have launched a daily COVID-19 Symptom Tracker App.  This can be used daily (takes 1 minute) even if you feel well.  Click here for more information.

On the surface, you should see little change in AMEND’s services.  The office is closed until further notice; however, Jo and Helen are working from home to keep the fires burning.

• New members will receive virtual membership packs until hard-copies are able to be sent
• Patient Events and fundraisers have been cancelled or postponed although we are looking at organising some virtual regional events
• Social Media Accounts continue to run as normal
• The Counselling Service is running as normal
• We are still contactable via phone (leave message at 01892 516076 only and it will be emailed to us) and email, but given the increased number of enquiries, we may not be as speedy as normal in getting back to you.

Friday 27 March

NEC and MCCC to be converted into Nightingale Hospitals along with EXCEL London.  PM, Health Secretary and CMO all have Coronavirus.  NHS staff testing being rolled out next week.

Thursday 26 March

Coughing deliberately at key workers and claiming to have COVID-19 becomes a crime punishable by a maximum of 2 years in prison.  New self-employed income grant for next 3 months at least (80% income up to £2500pm).  Conditions apply and may not be up and running until June – check HMRC over next day or so.

Wednesday 25 March

Over 400,000 people volunteer to help the NHS cope with Coronavirus (including retired health professionals).  Tests to detect if someone has had the virus still be evaluated and will be rolled out to NHS staff first.

Tuesday 24 March 2020

Student nurses and retired medics asked to help the NHS with the Coronavirus impact.

Monday 23 March 2020

Prime Minister, Boris Johnson, addresses the nation to ask that everyone stay at home and that non-essential businesses close to avoid over-whelming the NHS.  General public allowed to leave house only to do essential shopping for food or medicines, and to exercise outside property once a day if necessary (walking, running and cycling only).  DO NOT leave your home at all if you have symptoms or you are high risk and have been contacted by the NHS (by 29 March) and asked to self-isolate for 12 weeks.  Full details here.

Sunday 22 March 2020

‘Shielding measures’ introduced: NHS identifying highest risk patients who will be contacted over coming days and asked to self-isolate for 12 weeks (some respiratory, cancer, immuno-suppressed and transplant patients will be included).  Food and medicine supplies will be organised for these people (check links below).

Saturday 21 March 2020

No significant update.  Many shops and businesses to close.  National Trust closing their parks and gardens due to crowds making social distancing impossible.  General public strongly encouraged to stay home.

Friday 20 March 2020

Cafes, bars, pubs and restaurants to close tonight to sit-in diners (take-outs unaffected).  Gyms and leisure centres, nightclubs, cinemas and theatres too.  This applies to England, Scotland, Ireland and Wales.  Government to help pay wages through grant scheme for workers temporarily laid off or in furlough, back-dated to 1 March in addition to provision of business support loans, now available interest free for 12 months.

Thursday 19 March 2020

No significant updates today.  Keep washing those hands and practice social-distancing or isolation.  See links below for full information and guidance.

Wednesday 18 March 2020

Schools and nurseries will close on Friday evening (20th March) until further notice (except for children of essential workers, e.g. NHS staff and emergency workers) and exams cancelled.  Ban on evictions by landlords to be brought in for 3 months.  Society for Endocrinology updates it’s advice to steroid dependent patients.

Tuesday 17 March 2020

All non-urgent operations in England to be postponed (excluding cancer surgery).  Indication that people taking ibuprofen should change to taking paracetamol as former may have adverse effect on severity of the virus.  FCO advises British nationals to avoid all non-essential foreign travel for next 30 days.

Monday 16 March 2020

Social Distancing in effect:  UK Government recommends that all people who can work from home should do so.  Travel should be limited to essential travel only.  People to avoid pubs, clubs, theatres, cinemas, etc.