The Norwegian Directorate of Health has apologised for the way in which ME patients in Norway have been treated. This follows the publication of the ground-breaking research from Haukeland University in Bergen.
After the publication of the Rituximab study by Fluge et al (2011) and extensive media coverage since then the Norwegian Directorate of Health gave a short statement on TV2 channel, see TV2 Nettavisen.
A statement from the Norwegian Directorate of Health has been received where they apologise for not having provided the necessary and proper health services to persons with ME.
Such a public apology from a governmental health agency has never occurred before.
Bjørn Guldvog, Deputy Director General of theNorwegian Directorate of Health made the following statement:
"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."
Puts Norway a long way ahead of the UK in taking the condition seriously in biomedical research.
Written by
Ian123
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“The treatment of today’s ME/CFS-patients is comparable to that of lobotomy patients decades ago” “When the full history of ME/CFS is written one day, we will all be ashamed of ourselves”
Prof. Dr. Ola Didrik Saugstad, Professor of Pediatrics, WHO Advisor, Norway
“Hopefully, one day, my dream is that our medical community will produce a formal apology to the patients for not having believed them all these years that they were facing a real illness.” Jose Montoya, M.D. Stanford University
“I’ve had patients who met post-traumatic stress disorder criteria… where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD.” Professor Nancy Klimas, M. D., Miami
great quotes, very true. if only there were more doctors like these.
i do believe ME will Eventually be universally accepted as neurological with systemic components, but we have a long way to go to this stage although it could be done next week if the NHS faced up to the scientific facts.
i actually feel that the reality may well be that things may not change until some of the most influential psychiatrists in the UK retire.
This has been the case with other conditions that stay suffocated until the clinicians who dominate the field retire, and then only once they've retired more progress is finally made. As if the progress conflicts with the viewpoint of the dominant clinician(s) in the field then this prevents the progress regardless, so it takes that clinician/clinicians to retire for progress to come even when the progress is based on facts. This happened with a form of autism.
i feel this may end up being part of the story with Myalgic Encephalomyelitis, sadly.
But we must continue the push for biomedical research as the more there is and the more recent results keep coming in the harder it will be for the powers that be to continually ignore. There is already vast amounts that are ignored, but the more there is there harder it is to ignore.
Studying many articles and files on myalgic Encephalomyelitis I think many countries abroad have more sufficient treatment plans and more understanding of this condition within medical professionals.
Reading up on the Canadian law and guide of treatment for M.E I found this site informative mecfswa.org.au/Patient_Reso...
My friends aunt went to a specialist only in my nearest city and went from bed ridden with a catheter to now working in a part time job and even does boxercise classes.
The point is not for us all to go out and spend fortunes on private treatment as Like many I couldn't afford that myself. But it is proof that with more help and sufficed treatment the NHS could do more for us if they sought the knowledge on this condition.
The Canadian Consensus Criteria of 2003 phoenixrising.me/wp-content... show that Canada is further ahead than the UK and USA that chose the psychiatrists opinion for financial reasons.
In the USA health insurance giant UNUM does not pay for psychiatric illness so by labelling M.E as psychosomatic CFS massive savings could be made by the insurer, the same forces were at work with the DWP taking the opportunity for labelling M.E patients as lazy malingerers who had nothing medically wrong with them because doctors had no test that proved how ill they were. Successive UK governments have followed the "yuppy flu" theory as they try cutting the welfare bill, the first bio medical research funded by the MRC came in December 2011 all previous grants had been for psychiatrists and psychologists that used the "all in your head" technique spreading abuse and misunderstanding.
That's shocking news, so unjust for it to be labelled that way. I knew it was labelled that way in the 90s but I wasn't aware of the government still seeing it that way.
Shameful that they pick money over helping people. Especially people that deserve that help and would have no means of income without it.
This is the latest guidance from NICE nice.org.uk/guidance/cg53/r... reviewed in 2009 then frozen from further review for five years in September 2014 or until significant evidence changes opinions.
Individuals meeting the International Consensus
Criteria have myalgic encephalomyelitis and should
be removed from the Reeves empirical criteria and
the National Institute for Clinical Excellence (NICE)
criteria for chronic fatigue syndrome.
From the 2011 International Consensus on Myalgic Encephalomyelitis
The good news is the NICE guidelines tell the doctor they should assist students with a view to getting them gainful employment.
Yea, it's very true; the UK definitely choose to merge CFS and Chronic Fatigue with ME when they are different conditions to confound biomedical research so that results will be conflicting because different conditions are being studied as the same illness because the Uk Authorities and powers that be know that if the psychological causation and maintenance theories are continued to be attached to ME they will save a hell of a lot of money.
And they know that if biomedical research was done on ME patients much more exclusively using much tighter criteria than those which include chronic fatigue and CFS biomedical abnormalities would be so universal they wouldn't be able to ignore them.
So their strategy is to continue to try to keep ME, CFS and chronic fatigue viewed and researched together, which makes biomedical research much less useful and clear.
The authorities know that If ME were accepted as neurological it would have to be approached in terms of both treatment and research with much the same seriousness and resources as is multiple sclerosis.
There are continually multiple trials across the UK heavily MRC funded and supported into MS and as a result in the past 10 years many clinically effective treatments have been discovered for MS which are now in clinical use.
Most of these drugs are very expensive.
But as they improve outcomes and quality of life the NHS have been forced to fund these for MS patients.
They are not cured but they are very important treatments.
These advances in MS drug trials aimed at the biomedical processes that have found MS treatments have been highly expensive for the NHS.
The authorities realise that if biomedical research and drug trials were funded for myalgic encephalomyelitis across the board and all ME patients were managed by neurology clinics leading to better understanding of the disease, it would be highly likely to lead to medical treatment discoveries, which in turn would mean the NHS had to fund potentially expensive drugs for ME as well as neurology services such as specialist nurses etc.
Because they don't want to do that they remain in public denial.
Instead they funded the PACE trial into CBT and GET run by psychiatrists, psychologists and clinicians who believe it's a psychosomatic illness (the mind producing physical symptoms which are caused by faulty pdychological beliefs rather than physical abnormalities in the body).
The NHS, MRC and many professionals still champion the PACE trial as a great contribution to showing graded exercise and CBt helps and pacing which patients find helpful does not, but they ignore all the PACE trial's flaws and faults.
However this trial has been heavily criticised and the below article is very revealing about why it is criticised.
One of the criticisms is that the trial was heavily influenced by the Department of Work and Pensions who are looking to cut benefits for people with ME as a result of the trial and also the insurance industry who clearly would benefit financially also from ME patients being labelled as only needing exercise and not medical retirement, long term disability support and treatment.
The trial clinicians even altered the methods along the way to manipulate the results to what they wanted them to be!!
White, Chalder and Sharpe belong to the Simon Wessely school the outcome of the PACE trials was never in doubt anyone challenging the findings was obviously trying to justify a psychosomatic condition, a media campaign would discredit objectors as dangerous people making death threats - making them as dangerous for researchers as animal rights activists. Where ME patients would find the energy for such activity needed no explanation, demonize and denigrate has worked well for thirty years.
Myalgic encephalomyelitis/chronic fatigue syndrome and encephalomyelitis disseminata/multiple sclerosis show remarkable levels of similarity in phenomenology and neuroimmune characteristics
yea, i absolutely agree with you there was no doubt to the PACE trial results considering the study authors.
i think cos of all the media campaign and everything tho, the more people that see the strong and rational fact based reasons why PACE is fatally flawed as evidenced in the article i shared the better.
I knew that we all know that the PACE trial was biased etc but i didn't know til reading the Invest iN ME article that there was such strong provable facts against it - so that skeptics inclined to favour PACE can have it laid out in front of them.
Also, i know MS had the same appalling track record historically as ME for being labelled as psychological, but the advent of MRI scanning brought an end to that.
However, in ME SPECT, PET, FMRI and QEEG show definitive abnormalities in ME proving it's neurological and organic rather than psychiatric (not to mention evidence showing abnormalities in other body systems).
But the same has not happened as did with MS; this is being covered up by denying research funding and denying patients with ME these tests on the NHS (ie PET and PET-CT scans as the ones currently available for other conditions on the UK NHS).
Similarly NICE advises against muscle biopsies in ME patients, which again, would prove it has a physical cause.
Many ME patients don't even get an MRI scan!
It is a cover-up by the authorities to try to avoid the revolution that happened with MS in the face of new technology from happening with ME -- obviously for financial reasons.
Because as i mentioned in my previous post, MS being recognised as a neurological biomedical illness has meant a lot of money has had to be devoted to advanced medical research includIng drug trials, which in a short space of time found effective treatments which are now costIng the NHS big bucks.
Never mind that it improves patients' lives with a severely debilitating illness to give them less disability, better quality of life, etc!
You are right that MS and ME are remarkably similar in many ways. and the day that ME is treated with the same seriousness and resources to give proper current medical treatment (led by neurology services) and research to search for novel medical treatments and a cure as MS is now in the UK cannot come soon enough!
Neurologists are a large part of the problem with majority of ME/CFS services ran by the Infectious Diseases consultants.
84% of British neurologists don’t view CFS as a neurological illness
From the Journal of Psychosomatic Research, 9 April 2011
Lumbar punctures that gave a bio marker were the turning point for MS this is what is required for ME and the CFS diagnosis, anyone with fatigue for six months is a major obstacle for isolating patients with neurological symptoms.
The MRC have involvement in this meactionuk.org.uk/The-MRC-s... the question really is how much was their decision and how much dictated by the department of health.
I think we do have to consider the source of that figure of 84% of neurologists not believing 'CFS' is neurological - it came from the Journal of Psychosomatic Research! Figures can be manipulated!
I think the future should be ME care being led by neurologists but there is a lot of ignorance out there - the neurologists are simply not aware of the vast body of biomedical research into ME including neuro imaging abnormalities.
What is needed is the DOH not only to superficially accept ME as neurological but also to make their actions to reflect that.
They need to transfer care of ME patients to neurologists across the UK whilst providing training for neurologists on its' biomedical nature. Although the training is not realistic, I believe that the more neurologists are made officially responsible for ME patients, the more they will have to learn and update their knowledge on about the disease itself.
Also, although many 'CFS/ME' clinics are run by infectious disease specialists, this is very superficial as most of these consultants actually don't see it as an infectious or immunological illness and see it as psychosomatic or psychosocial.
Usually the infectious disease consultants just only see their role as making the initial diagnosis, after which point they discharge the patient and send them off for CBT and GET.
So it's an illusion that infectious disease consultants are managing ME patients as they are not.
Let's also hope Ian Lipkin's lumbar puncture research progresses further too.
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