Do you have a diagnosis of ME or CFS from the NHS?

For decades many people with suspected ME have not been able to find an NHS professional to confirm their diagnosis. As the NHS has had nothing to offer, people have been forced to seek support and treatments wherever they can.

The launch of the recent Decode ME DNA study into ME has caused some to question if it is time to make another attempt at getting a diagnosis.  The researchers are looking for 20,000 people living in the UK with an ME or CFS diagnosis from a health professional, and 5,000 who developed ME following a COVID infection. Participants may be asked if they agree to provide access to their NHS file for further research.

Health Boards in Wales tell us they have adopted the 2021 NICE ME/CFS guideline so if you have been unable to get a diagnosis in the past, theoretically you should be able to get one now. If you decide to ask your GP to confirm you have ME and they do confirm it, the benefits could include:

• enables you to take part in research.
• you are counted by NHS Wales. (NHS Wales records ME using the SNOMED classifiation system which has a category for ME: SCTID: 52702003). New services can be commissioned or extended when statistics show there is a demand.
• opens up easier access to support services and benefits.

Make sure you are prepared before approaching your GP. Check out the NICE guideline

If you meet resistance from doctors to using the revised NICE guideline, or are refused a diagnosis without cause, please tell us and this information will help WAMES challenge the Health Boards to #ImplementNICEmecfs.

If you have received a diagnosis in the past from a professional outside the NHS or a non-medical NHS professional, such as a therapist, nurse or pharmacist, you might wish to check with your GP whether that has been accepted and included in your medical notes.

The NHS is under great pressure and is struggling to catch up with a backlog, with a reduced quota of staff, so you may feel that getting a diagnosis is not a necessary use of their time. It is worth considering the time that could be saved in the future by having an accurate record of your health status in your records. When you need to consult a new GP, they won’t have to ask the same questions, do the same tests, and should be able to direct you to the most appropriate services straight away.