Covid-19 & ME/CFS Wales: Why is my carer being offered the vaccine, when I still can’t get it?

I’m Sarahjayne. I am 32 years of age and I live in South Wales.

As well as M.E. I live with a range of other comorbid, chronic conditions that include Fibromyalgia and Condensans Ilii.

Recently, I have had to turn disabled activist to try to help myself and others be treated fairly within the medical system.

I could see there was going to be an issue with people with M.E. getting the Covid-19 vaccination because of the same issues we have had trying to get a free Flu Vaccine.  

I didn’t have any success when I sent a letter to my GP asking whether I would be given the vaccine under the JCVI Group 6. After being told that I wouldn’t be eligible I contacted my local MP who escalated this to the health board.

At the same time, I contacted my community health council (CHC) who notified me that because I (and others) had taken this to them that it had been escalated to the Welsh government for discussion. I must thank my MP and the CHC for putting up with my emails and chasing these issues in a timely manner; but it has not been a happy outcome.

I had the following reply from the CHC:

“The Covid 19 Vaccine Clinical and Prioritisation panel discussed and agreed with the JCVI and CMO 4 nation advice that there was no additional risk for sufferers of ME/CFS.

“The decision not to prioritise was shared with the Operational Board – with all Health Board Ops leads and at Deployment Board with all Health Board SROs.”

And, included in the reply from my MP:

“Thank you for your email on behalf of your constituent, we can confirm that Welsh Government has agreed at a National meeting earlier this week that patients with CFS/ME are not included in the criteria for cohort 6.

“We understand that this will be disappointing for your constituent’s and apologise for any distress this situation is causing them. However, as this has now been agreed at National level by the Welsh Government, we as a Health Board are unable to alter this decision.”

To add to my frustration, my husband – who is my carer – has been offered the vaccine, although I still have not. It remains a postcode lottery in Wales with most not getting the vaccine while some are achieving success mainly by contact with their GPs who are using their clinical judgment.

Dr Charles Shepherd (Hon. Medical Adviser) ME Association comments:

The situation in Wales and the decisions taken by the Welsh Government are not reflecting the JCVI Group 6 guidance which gives GPs the ability to use their own clinical judgement when deciding who should and should not receive a priority vaccination.

Initially, we felt Wales was adopting the correct course of action and recognising ME/CFS as a chronic neurological disease, but this has now been overturned by the Government.

All we can suggest to people who haven’t been successful is to try speaking with your GP again and using the template letters where necessary. You need to convey why you feel an early vaccine is necessary given your own circumstances (e.g., housebound, severely affected, history of infections leading to relapse, etc.).

While we hope that people in the remaining age groups will be offered a first vaccination by the end of July, people with ME/CFS who can’t get a priority vaccination should continue to follow the Covid protection measures and continue to practice self-isolation and/or shielding if considered necessary.

What can I do now?

It is important if you are living in Wales that you take the following steps because you might be more successful than I have been, and it will help to keep up the pressure:

ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.