I have been diagnosed with CFS/ME- what does it mean?
If you have extreme fatigue for more than 4 months and tests have excluded other causes for your symptoms, then you may be diagnosed with CFS/ME. We still don’t know the exact cause for this problem. It is triggered by an infection in about 70% of people and women are more commonly affected than men (up to about 75% of cases are in females).
Pushing yourself to do too much actvity can cause you to have a sudden loss of energy (or crash) if you have CFS/ME. If you sleep or rest excessively and then overdo things at other times, this can also make your symptoms worse. This is very strikingly different from healthy people who don’t feel ill after pushing themselves and usually feel better after doing exercise.
If you have CFS/ME it can feel a bit like having an “energy” overdraft. You can borrow energy but you have to pay it back with interest. This can feel like “Boom and bust”. Conserving your energy and doing small amounts of activities that are spaced out through the day can help with your recovery. This is sometimes called pacing yourself.
Suffering from Infections, pain, sleep problems, stress, anxiety and trauma can all make your fatigue worse and impede your recovery. If you have other health, hormone or nutritional problems these can also affect your recovery.
How is it diagnosed?
In the UK you will be diagnose CFS/ME using the NICE guidelines for CFS/ME which were published in 2007. They agree with other guidelines in that they state that no single blood test can diagnose it. So it is diagnosed If you have symptoms for more than 4 months, and ypur blood tests and your symptom checklist exclude other conditions.
Getting diagnosed early is important
Once you are diagnosed you can get access the right treatment information to help you recover. Your CFS/ME treatment does not target the cause of the illness but can help you with recovery.
You need to steadily build up your activity level, get your sleep back on track, manage your pain, optimise your nutrition and limit your stress to help you to recover.
I have linked some useful information about CFS/ME below.
These links should help you if you have mild to moderate CFS/ME. They may not be helpful if you have severe CFS/ME.
If your CFS/ME is severe then you may need more support to help you recover.
Better treatments are needed because current treatments don’t guarentee recovery for everyone.
Self management resource links;
Employment resource links;
Treatments not currently available through the NHS;
- Hormone Facts & Information