4. Other Illnesses

Other names for ME / CFS, conditions which might be related, and similarities with other different illnesses.

Hello again! Now, this video might end up just sounding like a list of weird names for illnesses. In fact, that's pretty much what it is! Next time, I'll be talking about how ME is diagnosed, and trying to share what it's really like actually living with ME. But I felt it was right to do this now, just to try and give as full a picture of ME as I can.

Because, ‘Chronic Fatigue Syndrome’ - like any other ‘syndrome’ - is really just a label given to a particular set of characteristic symptoms, - and it doesn’t say how the illness actually “works”. With a diagnosis of Chronic Fatigue Syndrome or ME being used like this, as a general ‘umbrella’ term for illnesses which look the same, - so there are lots of different names for conditions which might be the same thing, - or which might be closely related. Or there might be conditions which might be part of the cause of chronic fatigue in a particular case, - or the other way round, they might describe some more of the symptoms. And there are conditions which could appear to be similar to ME, but in fact should be diagnosed differently and treated accordingly.

People with ME quite often don’t like the term ‘Chronic Fatigue Syndrome’ (CFS) - because it simply doesn’t describe the wide range of debilitating symptoms that sufferers can have, or just how severe they can be. In the USA, it is sometimes called Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). And if the ME was triggered by a virus, then early on after the virus, it can be called Post Viral Fatigue Syndrome (PVF / PVFS).

But the main term used is Myalgic Encephalomyelitis (ME), ‘myalgic’ referring to the muscle symptoms, and the ‘encephalitis’ part suggesting some sort of inflammation within a part of the brain - although some people prefer to use ‘Myalgic Encephalopathy’, to say that there is a physical disorder of the way the brain is working but not necessarily involving inflammation.

ME sometimes used to be called atypical polio, because post polio syndrome, which people can suffer for many years after an acute polio infection, has a lot of similarities with ME.

ME can also often be similar to serious infections, but instead the patient doesn’t seem to recover properly, and they continue chronically over a long time - for example, encephalitis, meningitis, and glandular fevers like Epstein Barr and cytomegalovirus (CMV).

Dysautonomia is very often a symptom of ME, which I talked about last time, but it can also be diganosed in its own right, or autonomic neuropathy. It’s the same with post orthostatic tachycardia syndrome (or POTS) and dysautonomic neurocardiogenic syncope (DNS), which seem to be related conditions involving the brain and autonomic system and how they regulate the heart and blood pressure, resulting in fainting and seizures, as well as other symptoms.

Fibromyalgia syndrome (FM / FMS) also seems to be closely related to ME, but the main symptom of that is severe pain of the muscles and soft tissues, but also including fatigue and lots of other problems, whereas with ME the exhaustion and brain function and autonomic symptoms are more often worse than the pain.

ME also seems similar in many ways to a general description of having exhausted adrenal glands (adrenal exhaustion). And, although having an underactive or overactive thyroid gland (hypothyroidism or hyperthyroidism) is officially a separate condition, personally I do believe there can often be a link between that and ME.

ME can have quite a lot in common with other conditions, such as so-called multiple chemical sensitivity (MCS), toxic syndromes (from poisons including organophosphates and pesticides, volatile organic compounds (VOCs), carbon monoxide (CO) poisoning, heavy metals including mercury, and ‘sick building syndrome’), Gulf War Syndrome, and sometimes post traumatic stress disorder (PTSD).

Sometimes people with ME can experience anxiety, panic attacks or hyperventilation as part of their symptoms - and these can sometimes be just one part of a number of factors in a sort of vicious circle which could contribute towards perpetuating the ME too.

Similarly, irritable bowel syndrome (IBS), food allergies and intolerances, and candida-type infections can be symptoms of ME, or they could be a separate diagnosis, or they could in fact be a factor in causing chronic fatigue type symptoms themselves.

All those conditions I’ve just listed, could be related to ME, or may have some overlap, - or perhaps just in some cases. But, there are also a number of other conditions which are not the same as ME but which can have some, or a lot, of symptoms in common - or possibly even sometimes some similar causes or triggers too. Someone with ME might have one or more of these conditions as well, so for that person, I’d say it could in some way be “related” to their ME - and treatment for one chronic condition should always take into account the full range of any other chronic conditions that person has. But any of these would still generally be treated as a separate illness, and it is important that they are diagnosed - or ruled out - separately by a doctor. They include:

Anaemia (or low haemoglobin level in the blood); coeliac (a diagnosed gluten intolerance), Crohns or colitis (inflammatory bowel disease); Gilberts Syndrome or other liver diseases, hepatitis B or C infections; other infections including HIV, Lyme disease, leptospirosis, tuberculosis (TB); specific primary hormone (or endocrine) diseases, including thyroid conditions, diabetes and hypoglycaemia (or low blood sugar), and pituitary disease (Addisons, or Cushings); other neurological conditions including multiple sclerosis (MS), myasthenia gravis (MG), Guillain-Barre syndrome (GBS), epilepsy; Hodgkin’s lymphoma; rheumatic arthritis, lupus, or other auto-immune diseases; primary sleep disorders - idiopathic hypersomnia, insomnia, sleep apnoea, narcolepsy; breathing disorders; depression, bipolar disorder, OCD (obsessive compulsive) spectrum disorders, eating disorders, attention deficit hyperactivity disorder (ADHD), and autism.

That’s not a full, comprehensive list of other possible diagnoses - but more information is available from The ME Association, and their ‘Purple Book’, and of course from your own doctors. More about how ME is diagnosed next time.

Purple Book = Dr Charles Shepherd, Dr Abhijit Chaudhuri: ME/CFS/PVFS - An Exploration of the Key Clinical Issues - The ME Association (2011 Edition) http://www.meassociation.org.uk/