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ME and EU
“Very few doctors in Denmark know that ME is a biological illness, so most patients do not get an ME diagnosis.”
"Instead, when a patient presents with ME symptoms, they are told that they are stressed, just need to pull themselves together and get some exercise. “
“The main reason for this overwhelmingly negative attitude about ME, is a long campaign by a group of psychiatrists
who are working to have ME seen as a form of somatoform disorder"
"A doctor in Vienna, recommended to me by a ME / CFS group, made a diagnosis of CFS, amongst other things.
I can not obtain a second opinion, because according to ME / CFS Help Austria, this doctor is the only one in Vienna!"
“…hardly anyone takes you seriously, you are usually left totally alone, especially by doctors, you are ridiculed, accused of just being lazy,
not wanting to get better, and told that you should just make more of an effort. !”
"There is no study or any estimates to show or at least a demarcation if there ever was any study to establish a percentage of
how many ME sufferers there are there. Some doctors say it is approx. 0.02 % same as in Europe. Due to unwillingness to diagnose and lack
of knowledge on ME, it's difficult for doctors to give an accurate figure."
"They don't support us too much around this disease, like we're nothing.
We are not noticed even though we are very tired and we are hurting.
We are invisibly ill, like a house that has a nice facade, but you can’t see that inside it has a fallen staircase and a broken sink."
“I was denied help for cleaning as it was considered anti rehabilitive and a house because a psychologist told me that he
didn't see anything wrong with me or my situation. Financial support went well but for many it's very difficult, more often than
not people even need to fight it out in court. Very sad.
"CFS/ME is classified as a psychiatric disorder by most of the doctors and they tend to treat it with antidepressants and graded exercise
therapy (GET) which are potentially very harmful to patients and may permanently worsen their condition. Fortunately for the patients even these harmful
therapies seem unavailable as there are no experts to even carry out GET-therapy. Patients are totally left without any care."
"Our own Department of Health tends to follow the advice given by the UK Department of Health. Following the 2002 CMO report in the UK, our
then Chief Medical Officer told an IMET delegation that they wouldn’t intend to reinvent the wheel, but would follow the course laid down by the UK."
"As far as the Government is concerned, it doesn’t have a clue about ME/CFS
Greece does not have a specialist clinic for the diagnosis and treatment of ME/CFS"
"..the psychosocial view is common, and there is a disturbing tendency to clump ME/CFS together with medically unexplained symptoms (MUS). However, there are a
minority of doctors who recognise ME/CFS as a biomedical illness."
"In Poland, the illness is largely perceived as being in the mind and not a biomedical condition.
there is one center in Bydgoszcz where ME is diagnosed, but they then tell people to exercise"
"ME is being perceived as a psychological disorder treated with CBT and GET despite the fact that the KCE (Federal Knowledge Centre for Health)
issued a report in 2008 stating that this therapy given in the reference centres, wasn’t effective
Getting diagnosed in Belgium usually takes a lot of time. With the available care facilities being ineffective and insufficient, patients with CFS have to wait sometimes
years to receive a diagnosis."
"Support for ME/CFS patients in France is still very uncertain and often very difficult to obtain. Despite suffering very severely
patients often find that their disability is not recognised, and this adds to their suffering."
"I think we could count the doctors willing to be updated at the international level with the fingers of a hand
I've seen/read many other experts in the country say things that are completely out of tune with the international conception of the illness.
lot of doctors have laughed at me when I told them I had CFS, others have told me I just needed to get a boyfriend... "
"Some doctors want to get rid of you as quick as possible, because your results are good.
They think you are pretending or something. .......... I don’t think the government care, because this illness
is invisible and there is not enough proof that it’s real."
"No diagnostic and therapeutic standards for ME / CFS have been introduced into clinical practice in the Czech Republic.
Patient care depends on their luck whether they can find a doctor who does not solve whether or not he is diagnosed
(and does not send everyone to psychiatry immediately), but he is treating real problems."
Mike's EU Marathons
Mike's EU Marathons JustGiving Page
Raising Awareness of Myalgic Encephalomyelitis
Listen to the Patients
Letter to Finland's Valvira - CBT and GET
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