Although there are now several biomedical tests which indicate the presence or likelihood of ME1, so far none have been adopted as a standard diagnostic test2. ME is therefore diagnosed by a process of elimination.
If you think you may have ME or if you were diagnosed as having ME without tests, it is important to get at least some basic tests done to eliminate other conditions (though bear in mind that illnesses can co-exist, so a different diagnosis does not necessarily exclude the possibility of ME).
You may also need further tests, depending on your individual symptoms.
The following list is based on The Chief Medical Officer's Working Group Report on CFS/ME, 2002; Guidance On The Management Of CFS/ME, Action for ME, 2002; ME Diagnosis: Delay Harms Health, The ME Alliance, 2005; other articles from Action for ME and the ME Association; and discussions with my GP. I have tried to eliminate repetition, but I may have inadvertently included some tests more than once as it seemed important to be as inclusive as possible.
Basic Screening Tests
These should be done before a diagnosis of ME is made.
Full blood count and differential
C-reactive protein (CRP) or acute phase protein changes (ESR)
Blood biochemistry including creatinine, urea and electrolytes, calcium, sodium, potassium, and glucose
Creatine kinase
Thyroid function tests
Liver function tests
Urine tests for Renal Disease and Diabetes
Full blood count and differential
C-reactive protein (CRP) or acute phase protein changes (ESR)
Blood biochemistry including creatinine, urea and electrolytes, calcium, sodium, potassium, and glucose
Creatine kinase
Thyroid function tests
Liver function tests
Urine tests for Renal Disease and Diabetes
Other Tests
You may also need to have some other tests, but these will depend on your symptoms, and on the results of the basic tests.
If evidence suggests an endocrine disorder, you should
* have pituitory and adrenal function tests
* be tested for levels of the hormones melatonin, cortisol, and seratonin
If joint pain is prominent, you should
* be given autoimmune and rheumatology screening tests, including test for altered cytokine levels
* specifically, be tested for Lupus
If you have severe gastrointestinal symptoms, you should
* be tested for Coeliac Disease (NB this test will not work unless you are eating wheat regularly)
* be tested for Crohn's Disease
If you live or have recently travelled in areas where it is endemic (eg the US, Scandinavia, Australia) or if there is a chance you have been bitten by a tick (even if you live elsewhere) you should
* be tested for Lyme Disease
If you have trouble standing up, you should
* be tested for Postural Orthostatic Tachycardia Syndrome (you might just have this, but it can also be a symptom of ME)
You might also be tested for
* other neurological conditions such as Multiple Sclerosis, and Myaesthenia Gravis
* other autoimmune diseases such as Addison's Disease, Sjogren's Syndrome, and Hughes Syndrome
* other infections such as Hepatitis B/C, Parvovirus, Brucellosis, and Heliobacter Pylori
Other rare causes of ME-like symptoms
You should not need to be tested for any of these unless your circumstances mean they are likely problems.
* carbon monoxide poisoning (at a low level, eg from a faulty boiler)
* organophosphate poisoning (eg if you were caught in pesticide spray before becoming ill)
* mercury poisoning (eg if you had dental work to remove/replace fillings before becoming ill)
Tests For Vitamin and Mineral Levels
People with ME are often (though not always) low in one or more of these vitamins and minerals. If you are found to be low in any of them, the appropriate supplements may help with some of your symptoms. Please discuss any supplements you take with your doctor or medical specialist.
Magnesium
Calcium
Iron
Phosphate
Zinc
Folic Acid
Vitamin B12
Magnesium
Calcium
Iron
Phosphate
Zinc
Folic Acid
Vitamin B12
Footnotes
1For instance, MRI scans show abnormalities in the brains of around 80% of people with ME; the spinal fluid of people with ME contains proteins which are specific to the illness; and a range of immune system abnormalities are found in people with ME, including low number and function of NK cells, poor T cell functioning, a Th1/Th2 imbalance, and an abnormal CD4/CD8 ratio.
2There is no diagnostic test for various reasons - for instance, some tests indicate the presence of illness but are not specific to ME; some are very complicated or very expensive to perform; and some of the research is just too recent.
