Common misconceptions concerning ME-patients and their families

Norwegian original 

Misconception no.1: ME-patients just want a pill and no other form of help.
Wrong! ME-sufferers want help and they do want to get well. It is as simple as that.

If some of the patients wish and are able to test one or more of the hundreds of good advices they get over the years, it is of course perfectly fine. But please do not force it onto all orhers. Everybody has a right to say no in this country.

No. 2: ME-patients prefer their illness not to be psychological.

Wrong! ME-sufferers don’t care whether the illness would prove to be psychological in the end.
The only thing they don’t want is to be ill and loose year after year of their lives. And as the results from research keep ticking in, confirming there are biological causes of this illness, they understand why they kept getting worse every time they tried one of the good advices.

No. 3: ME-patients do not believe in the people who say they have recovered by use of methods like The Lightning Process (LP) and Cognitive Behavioral Therapy (CBT).

Wrong! ME-sufferers believe these people when they say that they are recovered, and wish them well.

But they also believe in those who say that these treatments had no effect, and in those who say trying LP, CBT and Graded Exercise Therapy (GET) made them worse, a lot worse.

Nobody knows why there is such a big difference in the effects these interventions have on the patients – yet. One of the reasons could be that for decades health workers have been a bit sloppy in diagnosing the patients. At the same time, a lot of doctors have been unsure of what to look for to diagnose ME and have given the diagnosis to people with different diseases that has fatigue as a main symptom. We will probably know much more about this fairly soon, as scientists all over the world are now working to find a biomarker.

No. 4: ME-patients are lazy and all they do is playing with their tablets or computers. They certainly have the strength to be on-line!

Wrong! A lot of patients do not have the strength to be on-line.

For other patients, being on-line is the only connection they have with the outside world. And lazy is certainly not the right word.

No. 5: ME-patients cannot possibly be as sick as they claim to be. «I saw a person I know in the shop yesterday!»

Wrong! They are even sicker than they say. When you see them, you see, you may be the first person to see them in maybe 4 weeks. And that short trip to the shop you saw can send them back to bed with earplugs and sleeping mask – some for weeks.

No. 6: Fatigue (exhaustion) in the name Chronic Fatigue Syndrome explains it all.

Wrong! Fatigue is only one of many symptoms in ME.

Fatigue also occurs in hypothyroidism, anaemia, coeliac disease, depression, psychological illnesses, MS, cancer, Sjögren’s syndrome and several other conditions and illnesses, as well as a consequence of treatments for cancer.

No. 7: ME-patients sleep all the time.

Wrong! Most ME-sufferers have disturbed sleep patterns, but most do not sleep all the time.

Some have difficulties falling asleep, others wake up too early, or several times during sleep, and some sleep for many hours. Regardless the type of sleep disturbance, the sleep they do get is non-refreshing.

No. 8: The mothers of ME-patients are neurotic and focused on symptoms.

Wrong! ME-sufferers have carers of both sexes, and mothers and fathers are equally worried. So are brothers, sisters, children, husbands, wives, aunts, uncles and close friends.

No. 9: ME-patients and their carers think they know everything and are prejudists.

Wrong! ME-sufferers and their carers find it necessary to educate themselves in international science and research to be able to help their loved ones as much as possible. The reason for this being that the newest international research has not yet reached the medical community in this country. Thus, a lot of doctors lack the knowledge and experience in diagnosing; how the illness presents itself; and the best way to treat it.

«By the sun’s nature eternally creating» by Henrik Sørensen Photo: The ME Parents 

No. 10: ME-patients and their families do not want a broad approach to research.

Wrong! ME-sufferers do want as much research as possible.

The research has been «narrow» for years – concentrating on CBT, GET and biopsychosocial treatment of «CFS/ME». We now welcome the biomedical science, researching well defined and diagnosed groups of patients, giving us results that might help us getting the right treatment for the right patient for the right illness.

All too often we see that doctors and other health workers lean on research that is controversial, like the PACE-study and similar research. Fortunately, we also have good doctors and health workers who pay attention and/or participate in biomedical science now underway. They make it perfectly clear that the disease is in the blood and not in the patients’ head, and they claim to have proof of evidence for it. Professor Olav Mella at Bergen university recently said on the Norwegian TV2 News:

What the collected findings in the now published study shows, is that ME is a disease of the blood, not in the patients’ heads.

I think one of the most important consequences of our findings is that more people start to realize that this is a real physical disease. And the positive findings in this study is that this is an illness that is reversible and that the patients can have a normal, healthy life.

The conclusion should be obvious:

As every other human being, ME-sufferers and their families know their bodies and their minds best, and they are fully capable of reading and understanding scientific articles on ME. It is essential that they are heard. When ME-sufferers and their carers now find that science finally confirms and describes what they have seen all along, then it is most probably this science that will find the answers.

Not listening to ME-sufferers and their carers – is the biggest misconception of them all!

By Hanne R.