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ME and EUROPE


It is always interesting to hear that funding for research into ME is restricted, that there are many competing causes and funding cannot be ring-fenced to make up for the disparity of attention given to ME over decades.

Especially so when billions of pounds have been found and spent on Brexit.

Funding can always be found for ideological causes by governments pursuing their own agendas. The same applies to research councils. £5 million was awarded to the PACE trial despite a thoroughly flawed project.

Leaving the EU does nothing to help patients with ME in UK, or Europe.
Research itself suffers due to the lack of EU funding available and UK researchers will be excluded from leading EU projects.

Talking with researchers we have heard stories of chaos and uncertainty - seen as totally unnecessary.

It may be so that UK is being led headlong into the Brexit abyss but IiMER does not intend to break links with Europe.

IiMER is part of the European ME Alliance (EMEA), now fifteen countries working together on ME and including groups and advocates with the same objectives.

EMEA

EMEA is a member of the European Federation of Neurological Associations (EFNA), with a member on the board representing ME, and works together to improve recognition of ME within Europe.

EMECC

IiMER initiated the European ME Clinicians Council (EMECC) bringing together the leading clinicians treating ME in Europe.
Already the group has met twice and has created working groups on various subjects.



EMERG

IiMER initiated the European ME Research Group (EMERG) bringing together the leading ME researchers in Europe.




Europe needs to perform research into ME and EMERG can provide the guiding light for that to occur.

European research has so much to offer and a collaborative approach in biomedical research into the disease will achieve results.

In Europe we need to fund European researchers working together.


What is clear is that the same problems that exist with ME in the UK also exist, to a greater or lesser extent, in all other European countries and will continue unless we harness all European resources to work on the problems.

One of IiMER's great supporters – Mike Harley – who is running 28 EU marathons to support the charity in raising awareness and developing a Centre of Excellence for ME that can see international biomedical and translational research set up in a European hub, able to develop treatments for ME.

His story was mentioned on Day 10 of the advent calendar.
Mike's' interviews with people in each of the EU countries he has visited is very illuminating.

Different countries in EU, all sharing the same the same problems with ME.

Politics, the evil of Biopsychosocial (BPS) doctrine, the lack of funding for proper research, recommendations from official bodies (heavily influenced by the BPS network) for deleterious Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET), the lack of belief of doctors in the disease, the stigma and mistreatment around ME, patients having to research themselves, the problem not being dealt with and not going away.....

And, of course, we are far better placed to work together in EU to resolve ME and give ME patients back their lives.

Let us look at some of the comments that Mike brought back from patients in the countries in which he ran.

Denmark

“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"



Austria

"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. !”



Malta

"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."



SLOVENIA

"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."



Netherlands

“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.



Finland

"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."



Ireland

"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."



Greece

"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"



Sweden

"..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."



Poland

"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"



Belgium

"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."



FRANCE

"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."



SPAIN

"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... "



LITHUANIA

"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."



CZECH REPUBLIC

"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 marathon reports are here - read more

We know that the evil of BPS has been allowed to spread its insidious network throughout Europe – like a cancer through each health system, corrupting doctors and research councils everywhere.

At a time where the mess of Brexit seems like a microcosm of the unpredictability and the unravelling of the world today then one thing is certain – IiMER will still stay close to Europe via the European ME Alliance and other initiatives such as the European ME Clinicians Council and European ME Research Group.

Leaving the EU will make no difference to the actual fact that, in all of the different EU countries, the problems with ME are the same as in the UK and will require the same efforts to be made to force change.

Working together in Europe is the best way forward.


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