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The belgian fight in the press : CFS is a rubbish-dump. the battle for the cfs patien

Discussion in 'Action Alerts and Advocacy' started by hildevdh, Feb 13, 2011.

  1. hildevdh

    hildevdh

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    "Chronic fatigue is a rubbish-dump. The battle for the CFS patient." (translation from Dutch)

    CFS in Belgium.

    Translation of an article in a major Belgian newspaper, 'De Standaard', today Jan. 24, 2011

    Original (Dutch): http://www.standaard.be/artikel/detail.aspx?artikelid=3835C9OL&subsection=3


    “Chronic fatigue is a rubbish-dump”

    The battle for the CFS patient.

    By Griet Plets, in De Standaard, 24 Jan 2011

    Brussels - Yes or no, psychosomatic or more than just 'all in the mind'? The discussion about chronic fatigue (CFS) rages on since many years. This afternoon the matter will be pushed to the extreme, as Francis Coucke appears before the Order of Physicians. They call his treatment of CFS 'non-scientific'. That's bullshit, say his patients, and dozens of them are heading for Brussels today to support their doctor.

    (from our editor)

    They even hired a bus to join forces. About 50 patients have registered, but Julie Vanherck hopes around 150 people will be present. “We even received e-mails from the Netherlands, from people asking us for permission to follow the bus in their cars”.

    A disaster, that's what Julie Vanherck calls this procedure the Order of Physicians initiated against Francis Coucke. This afternoon Francis Coucke has to justify himself before them for his 'non-scientific' treatment of patients with chronic fatigue syndrome (CFS). He risks being suspended for a two year period. Earlier, in June last year, Coucke and his colleague Annie-Marie Uyttersprot have already been fined a sum of 635.000 Euro. According to INAMI they had prescribed medications that CFS patients do not qualify for, but the two doctors appealed against the decision.

    “I know for sure”, says Julie Vanherck, “if dr Coucke hadn't treated me, I would have been in a wheelchair by now. Thirteen years ago I was diagnosed with CFS, and, since then, I went through all the 'normal' treatments: behavioural therapy in the CFS reference centre in Leuven, pain medication, antidepressants. But I never got better. When the pain and fatigue continued to worsen early last year, I went to see Dr Coucke. He gave me infusions with amino acids and parenteral nutrition. Because the cause of my complaints was not, or not exclusively, psychosomatic, Dr Coucke told me. It appeared I had serious stomach problems and a malfunctioning immune system – my body weight was hardly 53 kgs at the time.”

    Whether or not psychosomatic, it touches the core of the discussion that's been going on about CFS over the years. It is generally accepted that CFS is caused by stress, and therefore is essentially psychosomatic. To be blunt here: it is – for the most part – all in the mind, although an infection, difficult childbirth, or a whiplash, can be triggers.

    Diagnosis

    But not nearly all doctors look upon it that way. “I think far too many people are receiving a diagnosis of CFS”, says Francis Coucke, internist, endocrinologist ('hormone specialist') and geriatrician. “They show symptoms like fatigue, sleeplessness and muscle aches, and, because there is no immediate evidence of a cause, they are classified as CFS patients. While in most cases, if you look deeper, there is a demonstrable cause. You can consider it like this: CFS doesn't exist – in those few cases where we cannot find a cause, the patient is often suffering from depression. CFS is a rubbish-dump, and I am trying to clean it up.”

    More specifically, Dr Coucke always checks three factors: nutrition, immune system and hormone levels. If one of these systems is dysregulated, it often explains – according to Coucke – the symptoms of CFS. “I had a woman who came to see me who had received a serious blow to the head. She developed symptoms indicative of CFS, but when I saw her, I noticed there was a problem with the pituitary gland, the gland located in the anterior side of the head, that produces many hormones. The blow had caused a nearly complete stop of growth hormone production, so I supplemented with growth hormone. She is working again now.”

    It sounds simple, but, if that were true, why doesnt regular medicine arrive at the same conclusions? Because, says Coucke, regular medicine is far too rigid, and he's not the only one who holds this opinion. Other doctors like Michael Maes and Kenny De Meirleir are equally arguing in favour of alternative therapies. “Take the hormone cortisol. A patient's cortisol values need to be very low if he wants to qualify for treatment with extra cortisone in regular medicine. I do that much faster, because I believe low cortisol also contributes to fatigue. But how do INAMI and the Order of Physicians respond to that?: You give cortisone to patients who do not qualify for that, because in fact they have CFS.”

    Experiment

    “As simple as it may sound, the reality, unfortunately, is much more complex”, says Boudewijn Vanhoudenhove, professor emeritus in psychiatry, and the driving force for many years of the CFS reference centre in Leuven. “We also performed tests with extra cortisone for CFS patients. Initially this gave a slight improvement in some patients, but not at all in the long run. And that's logical if you think of it: if you give cortisone, you are sending a signal to the brain that it had better stop producing cortisol. So that method doesn't work, and we proved that with groups where one half of participants received real cortisone, and the other half a placebo. Just like scientific research has to be done. But that's not what Dr Coucke is doing: he is experimenting, but he cannot prove that his methods are equally effective and reliable on a larger scale.”

    Isn't that a critique by a field that likes to stick with the old ways and abhors experiments? 'Not at all', says Prof Van Houdenhove', “I don't object to the fact that, beside the more conservative doctors, some doctors like to experiment more and deviate from the beaten track. And I don't give an opinion on the sanction that Dr Coucke could incur, which is very severe. But even doctors who experiment have to take the necessary next step: prove scientifically that their successes are not chance hits. And that's where it often goes wrong. The only thing that has ever been proven scientifically, is that CFS is a stress-related condition, that has indeed some physical aspects, but is best treated with behavioural therapy and adapted revalidation. The first thing patients should learn is how to cope with the disease. The better they do that, the larger their chance of a natural recovery."

    Vanhoudenhove acknowledges that it is not a miracle therapy. In 2008 there was a huge critique of the 5 CFS reference centres, where patients are treated with this behavioural therapy. Not very successful, that was the judgment of the Federal Knowledge Center for Healtcare, and the High Council of Health.

    Hard

    “That criticism was issued because INAMI's expectations were too high” says Van Houdenhove. Their intention was to get as many patients as possible back to work, but that aim has shown to be too high. A fast recovery, let alone a complete cure, is generally not possible in CFS – that's our experience of the past years. That is hard, most of all for the patients, but there is no alternative. By the way - Dr Coucke may boast of his successes with patients - I can also immediately provide you with a list of patients who are satisfied with the CFS centres. And who, thanks to behavioural therapy and gently increased exercise, are much better today.

    Moreover, it is not without a good reason that regular medicine is so strict, says Prof Van Houdenhove. “Don't forget that cortisone and other experimental treatments have side effects that are not always harmless and may worsen the patient's problem. Extreme caution is necessary with this sort of medication – why don't you ask an internist, a specialist in these matters.

    So, an internist, in casu Professor Daniel Blockmans (KULeuven). He is even more harsh: “Whatever some doctors might claim, nearly everyone in the scientific literature agrees: CFS is a psychosomatic condition, period. Of course the immune system and hormone regulation are sometimes disturbed, but that's the whole 'chicken and egg' discussion: those disturbances are not the cause of the extreme fatigue, they are the consequence. Doctors who turn that around are quacks, even if they hold a degree.”

    And the Order of Physicians themselves? They didn't want to comment. “The session is public, madam, so feel free to attend. This is a very serious disciplinary case, which we will not discuss in advance”.

    (Translation from Dutch, Linda Vansteenwinckel)
     
  2. hildevdh

    hildevdh

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    Opinion by medical journalist Marc Van Impe, in response to the article

    "CFS is a dumping ground”

    (Belgian newspaper" De Standaard "dated 24/01/2011 - translated from Dutch original)

    (This opinion was not published in the press)

    "CFS is a lie” In an article entitled “The battle over CFS patients”, which appeared in last Monday's edition of De Standaard, prof.Dr. Boudewijn Houdenhove once again repeats his classic mantra: “CFS is stress related, and should therefore be treated with behavioural therapy and appropriate rehabilitation”. His colleague Professor Daniel Blockmans says:” Almost everyone agrees: CFS is a psychosomatic disorder”.

    In a draft Royal Decree, which regulates the operation of the 5 university CFS-reference centres in Belgium, the INAMI (Belgian national institute for health and disability insurance) states that CFS/ME is maintained by negative cognitions such as "excessive attention to pain stimuli”, fear of movement and resulting deconditioning.

    In this draft Royal Decree, the INAMI proposes to ban biomedical diagnosis and treatment.

    In INAMI policy documents, biological abnormalities are systematically refuted.

    And yet, a prior assessment of the CFS-reference centres by the KCE (The (Belgian) Healthcare Knowledge Centre, a semi-governmental (federal) institution) showed that after five years of experimenting, the results were nil.

    This is beyond our comprehension.

    In the explanatory preamble to the RD, the author, prof. Jean-Pierre Baeyens, wrote that these conclusions were reached on the strength of "evidence-based” data from reputable scientific research.

    Surprisingly, no mention is made of the study by the American Whittemore Peterson Institute, the National Cancer Institute and the Cleveland Clinic, published on October 8th 2009 in Science Magazine , which showed evidence of a viral infection, caused by a retrovirus, in no less than 65% of CFS / ME patients. In the U.S. these findings have led the CDC to assume control of research into the cause and treatment of CFS / ME, taking it out of the hands of the bio-psychosocial school, and the team that currently does research on HIV has now been put in charge of new CFS/ME research.

    British research published on January 6th 2010 (PlosOne) attempted to disprove the US research. But once again, it appeared that the British researchers had decided between themselves which results should be achieved. This is nothing short of scientific fraud.

    The lead author, Dr. Wessely, has a reputation for not hesitating to produce heavily biased scientific work. A House of Lords committee already established, at the beginning of this century, that he was being financed by insurance companies.

    Van Houdenhove states that the INAMI's expectations of results achieved in the CFS-reference centres were unrealistic. That's an understatement. At the first working meeting of the leaders of the reference centres, CFS patients were already being labeled as “neurotic benefit shoppers”.

    Nevertheless, it is widely known that CFS patients would like nothing better than to be reintegrated into society and return to work (part time if need be). Nobody wants to be left without income. Nobody wants to be dependant on others

    There are drug treatments which can alleviate the many symptoms of this seriously debilitating condition. Children who receive early biomedical treatment, can actually recover. With the scientific knowledge currently available, it is a crime to deny them a healthy future. Adults can be stabilised when given the proper medication.

    There is also a great need for funding, to be invested in biomedical research, in order to further develop beneficial therapies. The INAMI, under pressure from the largest health insurance fund in the country (the CM, who have the most clout in the Inter-mutualist Committee, which reunites all Belgian health insurance funds) refuses to allocate such resources. What's more, doctors who do not tow the INAMI line are under threat of losing their livelihood.

    The worst thing is that the many patients who have been branded with a CFS label in the reference centres, can never again have the label removed , although they may in fact be suffering from another serious condition. There are numerous case studies of patients with cardiovascular disorders, cancer, hormonal disorders or severe gastro-intestinal problems. Such patients are denied further treatment.

    When it comes to CFS/ME patients, everything is an uphill struggle. It is even hard to stay honest. We as ME-associations, welcomed the setting up of the CFS-reference centres. We were mistaken. But we shall not give up. We want to rid ourselves of the premiss that CFS/ME is a bio-psychosocial disorder. We want physicians to be free to choose, in all due conscience, how they can best treat their patients and we do not want psychotherapy to be mandatorily imposed.

    What's more, is it not remarkable that a number of policy makers, including directors of health insurance funds, doctors and professors from various universities, have sent their CFS stricken family members for treatment to the two doctors who are now being prosecuted?

    One final point: both professors, Van Houdenhove and Blockmans, are regularly called upon as experts for insurance companies, who have a vested interest in upholding the 'psychosomatic' lie about CFS, because it suits them to have patients barred from all entitlements. When I questioned Van Houdenhove on the subject, he saw this as just one of the perversities of our system.

    I couldn’t have put it better myself.

    Marc van Impe

    The author is a medical journalist, co-founder of the CFS-League, and married to Dr. Anne- Marie Uyttersprot. The content of this letter was endorsed by the patient associations MEAB, CVS Contact Group and the Belgian ME-Association, and was previously sent to INAMI. There has been no response.
     
  3. hildevdh

    hildevdh

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    No imaginary illness

    Image of CFS is disastrous for patients

    written by : Marc Van Impe - Belgian journalist


    “Over the past fifteen years, quite a few misconceptions have deliberately been sent around the world", writes MARC VAN IMPE. He both explains and suggests why this may have happened.

    Few diseases create as much controversy as CFS. Care providers, legislators and journalists tend to react with irritation when this disease is discussed. The reasons are lack of knowledge, and a deliberately created false image.

    According to Professor Daniel Blockmans, the two doctors who offer their CFS patients a biomedical approach are 'quacks'. The scientific world agrees that CFS is a psychosomatic disease, according to the Louvain professor.

    However, there is abundant scientific literature to contradict this view .

    In this month's Rheumatology, Prof. Roald Omdal, from Norwegian Stavanger University Hospital, publishes the latest findings on the biological mechanism of chronic fatigue. He adheres to a clear distinction between depression and chronic fatigue. CFS is different, Omdal writes, because it is a chronic inflammatory disease. Omdal radically refutes the thesis that CFS is a psychosomatic disorder .

    In last week's edition of The New Scientist, Prof. Thomas Borody of the University of New South Wales, linked CFS to chronic dysfunction of the intestinal flora, leaky gut and chronic inflammation of the brain.

    In June last year, virologist Johan Weyenbergh, from the Leuven Rega Institute, described in 'AIDS' how the newly discovered XMRV virus may be the key to developing a treatment for CFS. This summer, an international symposium will be organized on this subject.

    On January 8, 2008 the Israel Medical Association Journal published an article, written by professors from the Universities of Padua and Tel Aviv, which reveals the pathogenesis of CFS. Malfunction of specific cell receptors is involved. They described treatment with gammaglobulines.

    In 2007 Jonathan Kerr described seven systematic genetic abnormalities in CFS patients in the Journal of Clinical Pathology.

    So, is CFS supposed to be an imaginary disease?

    635.000 euros

    Two doctors, Francis Coucke, an internist, and Anne Marie Uyttersprot, a neuropsychiatrist, have been severely disciplined for offering their patients biomedical treatment. First they were threatened. Subsequently, upon initiative by health insurer CM, a complaint was lodged against both doctors by the 'Association of Physicians' (the Belgian Medical Board) of Antwerp and Flemish Brabant. The complaint was rejected twice. Next, the 'Intermutualist Committee' (a Committee reuniting the various Health Insurance Funds in Belgium) brought a complaint before the Administrative Court/ Department for Medical Evaluation and Control. The two doctors stood accused of prescribing gammaglobulines and parenteral nutrition without justification. In a ruling by the court of first instance, the two doctors were sentenced to a huge fine of 635,000 euros. This was followed by a new complaint before the Medical Assocation of East Flanders, who suspended doctor Coucke for two years.

    Over the past fifteen years, quite a few misconceptions have deliberately been spread throughout the world . The source of these misrepresentations can be precisely located: it is the school of psychiatrist Simon Wessely, of King's College in London. This man is not only a psychiatrist but also an adviser to the world's largest insurance holding company, editor of the magazine for Evidence Based Medicine, and the English edition of the ICD 10. Wessely decided, by his own accord, to change the classification of CFS from a neuro-immunological disease to a psychiatric disorder. On February 11th 2004, the British Minister for National Health admitted the deception. On several occasions, the WHO had pointed out this anomaly and demanded a correction. Doctor Simon Wessely had been identified as the perpetrator of this scientific fraud. His "impressive research" and his impressive CV appeared to be "built on sand". The British Government responded by making the CFS records of the NIH inaccessible for the next 70 years. A most extraordinary measure.

    Finally, on June 9th 2005, the European Commission declared that with respect to CFS, priority should be given to research on the indicators of this neurodegeneration, neuro-development and non-psychiatric brain disease.

    Yet, in its latest statistics, RIZIV (Belgium's Institute for National Health) still counted CFS among mental disorders.

    This attitude by the government seriously affects patients :

    - private insurers are happy to use the psychological label as an excuse to avoid paying compensation,

    - hospitals confine CFS patients to the psychiatric ward or reject them altogether

    - and the RIZIV's advisory doctors ban CFS patients from receiving benefits, arguing that they are 'making up' their disability.

    - doctors working for health insurance companies threaten CFS patients with suspension if they seek advice from the suspended physicians,

    - while charlatans, who exploit the distress of these patients, can continue to do their worst.

    - in our country, everyone who dares to think 'out of the box' is first threatened, then severely punished and finally ridiculed.

    Cynical

    The patients' organisations are asking for an immediate end to this kind of malpractice .

    The CFS treatment centers, led by professors van Houdenhove and Blockmans, where only psychotherapy and physiotherapy are given, have been unsuccessful, as confirmed by two official reports. Moreover, many other diseases remain undetected and are therefore not treated.

    On several occasions patients, as well as the two doctors who stood under accusation, have asked the RIZIV, i.e. the National Health service, to discuss these issues. Proposals were made for real research projects. The only answer they were given is that patients who do not agree are free to seek redress through the Labour Court. This is an extremely cynical attitude, given the poor financial and physical condition most CFS patients find themselves in over time.

    Yet on the table before the Director-General of RIZIV is a draft Royal Decree which states, literally, that CFS is maintained by negative cognitions, such as “excessive attention to pain stimuli”, "fear of exercise” and consequently, deconditioning. In this draft, RIZIV seeks to ban biomedical diagnosis and treatment 'by decree'.

    This is beyond our comprehension. Unless it's all about money. Treatment by a psychologist doesn’t incur costs for health insurance funds, because such expenses are not reimbursed. Could this be the reason?

    MARC VAN IMPE

    Medical journalist, cofounder of the CFS-League, and married to Dr. Anne Marie Uyttersprot, who suffers from CFS since 1998. The contents of this letter are endorsed by the patient organisations Meab, CFS Contactgroup and ME association.
     
  4. eric_s

    eric_s Senior Member

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    How the hell can they write this??? The first sentence can very easily be proven wrong, since there is a great number of physicians, scientists and above all virtually every patient who hold a diametrically opposite opinion and for the second sentence they would not be able to prove this, so how can they state it as if it was a fact?
     
  5. Sean

    Sean Senior Member

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    And you are incompetent, a bully, and a fraud. Period.
     
  6. hildevdh

    hildevdh

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    are'nt you shocked that the response of the medical journalist, who's defending the biomedical approach, was denied first? The newspaper would not publish it! he had to rewright is... and the third post was published in the paper and on their online-paper (but after few hours it was already offline)...
    the psychosomatic vision has all power .... it's a shame!
     
  7. kurt

    kurt Senior Member

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    Sean, you are far too kind. Any credentialed person who says ANYTHING about CFS with certainty such as this, is worse than uninformed, incompetent, bully, fraud, they are obviously delusional about their own knowledge. I would not trust them to treat anything. The question I have is why so many delusional people are attracted to CFS politics? Our illness is one of the great modern mysteries, yet to be untangled, period... Until there are equitable sums of money spent for rational, clear-thinking, unbiased research, we are unlikely to get to the answers. And until we have an accurate reputation, we are unlikely to get the levels of funding required (hundreds of millions of $$ per year).
     
  8. SOC

    SOC Senior Member

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    Do medical professionals routinely bother to be that insistent and negative about other illnesses? It strikes me as distinctly bizarre, the way they seem compelled to be so certain in areas where they do not have extensive experience. It sounds like they have a personal reason to deny ME/CFS is a "real" illness.

    "Methinks he doth protest too much."
     
  9. eric_s

    eric_s Senior Member

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    What imbeciles. Good parts of the medical establishment, especially in Europe, really seem to have their heads up somewhere where the sun never shines. Excuse me...

    How can a doctor be satisfied with the fact that a cure is generally not possible? That is the clearest indication that your approach is not sufficient and therefore it's necessary to do more and better research to get to a better approach!

    For the second statement, it's more or less the same that the other chimpanzee has said earlier. And i'm pretty sure a review of the scientific literature globally, outside of the UK, Belgium and Holland and some other countries (sorry), will prove that it's not true. This can be proven in court. And i really think this is where we should take those people. Are there any lawyers with ME/CFS in Belgium? Try to find them. Or if you have the money go ask a lawyer. I think our first priority should be research but we should also build a network powerful and well funded enough to do a court case, if necessary. We must show those people that there is a line and if they cross it there are consequences. Organisations and PWC all over Europe or even the world should help each other out and sue, in such a case, if an attorney tells us there's a reasonable chance of success.

    More crap... If that was true, which it's not, it only demonstrates how incapable your profession is, as there would obviously be a million people in Europe where you can't find the cause of the symptoms. So why trust what you say in the first place...
     
  10. justinreilly

    justinreilly Senior Member

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    NYC (& RI)
  11. Joopiter76

    Joopiter76 Senior Member

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  12. mellster

    mellster Marco

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    Even if stress often plays a role (I think it has importance), what kind of rubbish conclusion is that? I mean, some illnesses are caused by stress, some are caused by obesity or drinking/smoking, the flu is caused by a virus and broken bones are often caused by (extreme) sports, so what?? Each and every of the latter is being treated happily and readily by the docs, and ME/CFS should be treated readily and happily as well and the treatment should be paid for by insurance.
     
  13. eric_s

    eric_s Senior Member

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    I don't think there is any evidence that ME/CFS is caused by stress. Most sensible people suspect an infection of whatever sort as the cause/trigger. Stress, like many other influences, might make you more likely to catch an infection or to develop an illness after catching an infection, because your system is more vulnerable due to the negative influence of the stress, but i don't think it plays any further role than that and even in this regard i don't think it plays a very important role.

    Once you have ME/CFS stress might exacerbate your symptoms, but i think the same happens if you have a flu or any other illness. Also they say XMRV is triggered by stress hormomes. And in my case, as an example, i don't feel like stress makes me worse. I don't like it and stress usually coincides with more activity (because that's what stresses you, having to do a lot of things in little time), which makes you worse, but i don't have a problem with the stress per se.

    It would be nice if we could take legal action against the kind of statements Henningsen made (maybe that would even be possible), but apart from that i really don't think we should care too much about these people. Who is Henningsen? Is he from Harvard, Stanford, etc.? Did he get a Lasker award? Pulitzer prize? We have that kind of people on our side and they say otherwise. He's just somebody who doesn't really know what he is talking about and tries to make money, i guess. We have a lot to do to move our cause forward and if we do that successfully that will shut these people up once and for all and so i think we better focus on moving forward with the good research instead of letting people like him distract us and hold us up. Just look at the heart study that was posted here today, Komaroff's EEG spectral coherence study, the CSF proteomics study, XMRV, etc. There are plenty of leads to follow and we should push ahead with those.
     

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