Scientific conference warm up

I have just arrived in London for the Invest in ME conference 2013 which takes place on Friday. There are a lot of interesting scientists taking part this year, and I’m definitely looking forward to all the presentations of new research and promising leads tomorrow.

I will try to tweet from the conference if possible: @DeBortgjemte

At last years Invest in ME conference, I was invited to hold a speech at the pre-conference dinner. In the room were most of the scientists and doctors attending the conference. So as a warm up to this years conference I’m now posting my speech from last year.

Words matter

”In the end, we will remember not the words of our enemies, but the silence of our friends.”
Marthin Luther King jr

Most of you sitting here are not the silent type, so the reason I begin with this quote is definitely not an accusation – it’s a thank you to many of the people in this room. It’s also a way to highlight what I want to talk about tonight – which is the power of words – but first I have to tell you a little bit about myself.

I have a mother that has been extremely sick and bedridden with ME/CFS for more than seven years. I also happen to be a journalist. This combination made me spend nearly three years writing a documentary book about the disease. Thousands of pages read. Hundreds of hours of interviews with doctors, scientists (some of you sitting here), patients, carers, nurses, lawyers, politicians – you name it.

Some of you have seen me around at conferences the last couple of years, beginning in Reno in 2009. I haven’t missed many since.

The book was published 7 months ago, and since then there has been quite a stir in Norway around ME/CFS. A big part of the blame for that I have to hand to scientists at Haukeland University Hospital, by daring to give these patients big gun cancer drugs. More about that later.

Like I said, I’m a journalist. And I’m sorry to say this – but ME/CFS is a great story. And it’s mostly untold. That is what triggered my interest. Of course, like every good scientist, you people have learned to hate journalists. I don’t blame you. But then again, even Rupert Murdoch hates journalists these days, so we must be good for something. And don’t worry, I’m not going to try to teach you anything about science – I know my limitations. I’m going to talk to you about the most powerful weapon of all – words.

When there is a lack of knowledge, everything comes down to words. How people talk about a disease, defines how society acts towards the disease.

On an important web page for Norwegian doctors, a GP was quoted: «Most women get this disease in their early thirties, before they settle down and get children. So it might be that the social pattern where women are expected to get an education before settling down, is a burden that they do not tolerate that well.»

I don’t think this theory is going to be our next Nobel Prize in medicine. But it’s still there on a web page that is supposed to educate Norwegian doctors on ME/CFS. And these kind of statements are purely based on preconceptions. There is no scientific evidence backing it up.

In one of the books I read during my journalistic research, I found the story of Dr. Elizabeth Forsythe. Bare with me for quickly reading the passage about her in this book:

“She had mild symptoms of a weakness and fatigue in medical school and those worsened in residency training. The symptoms were always attributed to a lack of effort or resilience, or if a medical term were needed for someone “without the guts to get on with it” – neurasthenia. She had episodes of worsening after the birth of her three children. She was later referred to a psychiatrist, and when she needed bedrest, was thought to be depressed. Although an experienced physician, she ignored her own symptoms for a long time, rationalized them in various ways, and when given the diagnosis, admitted that she really didn’t understand what it was all about. It is not difficult to understand why many patients also ignore and then rationalize their problems for a long time before presenting them to a physician, and then have little understanding of the nature of this diagnosis.”

I think I know what you’re thinking. Typical story, isn’t it? You’ve all heard it in your clinics, or from your patients at the hospital. Typical ME/CFS. A bit vague symptoms, a lot of doctors involved, no diagnosis, sent to a psychiatrist.

And you’re absolutely right. Except that Dr. Forsythe didn’t have ME/CFS. She told her story in the Guardian in 1979 – and she had Multiple Sclerosis. And reading the history of MS, you will be stunned by the similarities. But MS is still so very different. The medical world, and society, believes in MS – and use different words. We talk differently about it. And because of that society acts differently towards it. Rehabilitation centers, own courses in medical school, hospitals filled with MS-expert clinicians, drug development, billions of research dollars – humility and respect.

Words matter.

Here in the UK they did a study into the GPs attitudes towards ME/CFS. The survey is not so old, published in 2005. Only half the GP respondents believed that ME/CFS actually exists. No one made that much fuzz about it. But imagine the same study results in multiple sclerosis, or some other disease.

What if a survey had concluded: “Only half of the GPs believed that cancer actually exists”. Imagine the headlines.

In Norway we had a similar survey in more than 300 GPs. Around 40 % said they were sure ME/CFS was a psychiatric problem. The survey also showed that nearly half of the GPs in Norway were open to the possibility of ME/CFS being an imaginary problem. This is not ok, but no one wrote about it. No one talked about it in public. The union of the GPs stayed comfortably silent.

A few years back, one of Norways most prominent psychiatrists wrote in a newspaper that he couldn’t understand why Norwegian Health authorities said there was about 9000-18.000 ME/CFS patients in Norway. In the article he asked, seemingly angry, “where does this number come from”, like the prevalence number was some kind of a joke. Well, as all of you are aware of – it comes from prevalence studies. Several of them reproduced over time. It would have taken the angry professor five minutes on PubMed to check this, but he obviously didn’t feel the need to do that.

Because he just knew. He didn’t need to check the facts. He had an attitude. Why let knowledge ruin the fun in a heated discussion. Then it’s not about finding the truth, it’s more about winning the argument.

Nothing is more powerful than words.

It’s not just words in the papers, or on television and at conferences. It’s also words in the corridors, in the back rooms of the hospitals, in closed meetings, at dinner parties. They are all powerful. Because words give rise to attitudes.

A Norwegian health worker told me that some doctors and researchers in Norway nicknamed the patients ME-Talibans as a joke. They nicknamed the patients after Taliban terrorists in Afghanistan, because the patients evidently were such strong believers in having a physical disease. Of course, this is quite funny – and it’s definitely funny if you imagine a Taliban guerilla full of ME/CFS patients. They probably would have been awarded the Nobel Peace Prize J

So yes, we must be able to laugh at ourselves, but this laugh had a bitter aftertaste. When words stick as a stigma, it’s just not right.

Because words matter.

Professor in immunology, Anthony Pinching, wrote an article in Clinical Medicine in 2003 comparing the development in ME/CFS and Aids. Diseases which came to the attention of the medical establishment around the same time in the 80s.

Pinching wrote: “Whereas the prospects for people with Aids have been completely transformed over some 15 years of pharmaceutical medicine and its products, those of their companions with ME/CFS remains little changed.”

Why?

In the early days in the 1980s Aids first and foremost hit the gay community in the US. This lead to a lot of stigma. People died, but media wouldn’t write about it, the medical world shied away from it – and money into research was lacking. All because of attitude and preconceptions. Knowledge was not driving the discussion. Some people even named it “the gay plague” and claimed the whole disease was because of injurious lifestyle and the stresses of being gay. Obviously, medical hypotheses and moral judgements had become confused.

All this while people were dying.

We all know that this has changed in AIDS. With HIV being discovered, it was no longer justified to blame the patients. We all tend to judge too easily, but moral judgements don’t go well with a virus. Thinking back, the preconceptions around AIDS sounds absurd today – but for those of us knowing the prevailing situation in ME/CFS – it is not absurd. It is our lives.

When the urgency of people actually dying is not there – how long will it then take for a stigmatized group to be taken seriously?

After the discovery of HIV, governments have spent billions of dollars funding research into AIDS. Great discoveries have been made. Patients have several treatment options. They live decent lives. It’s a victory of science and medicine. Every year the National Institutes of Health in the US spend about 3 billion dollars on HIV/Aids-research. And every year they spend about 3-4 million dollars on research into ME/CFS.

To grasp the difference, try this – one single year of research into HIV, equals about a 1000 years of research into ME/CFS. We can do the same comparison with multiple sclerosis. One year of research into multiple sclerosis equals about 40 years of research into ME/CFS.

This happens despite the fact that in scientific studies on functional impairment, ME/CFS ends up on the bottom of the list. In the last study where they used the SF-36 scale, the researchers concluded that ME/CFS, and I quote, “has a greater impact on functional status and well being than other chronic diseases such as cancer”.

This is not new. It was the same results on studies in the mid 90s. A lot of the ME/CFS patients are the sickest of the sick. So why the problem with preconception and negative attitudes? Because words matter. And when unjust is being done, it matters even more.

However, enough complaining, because I think the world of ME/CFS is about to change.

In May 2010 I met psychiatrist Simon Wessely for an interview in his office in London. I remember it was right after the Invest in ME conference that year, and I had to jump on a plane back to London again. You’re probably all familiar with Wessely, an influential and some times controversial scientist in ME/CFS, because he has favored a more psychological view of the disease, and he has very much been a public figure promoting this view. I talked to Wessely for an hour – or, more accurate, he mostly talked for an hour – but this is the situation with most of you scientists🙂

I’m not going to go into the interview with professor Wessely here, some of it is in my book, but I had an interesting farewell with him. I asked him if he thought there would be a medicine that would help ME/CFS patients in the future.

And he said “no”. Very abruptly.

Then he added: “Not in my lifetime”.

The answer surprised me a bit. Because I felt he answered it like it was a threatening possibility. And therefore also adding “not in my lifetime”, more like a preference than an actual prediction.

Because what if? What if they find a medicine?

That’s why Bergen, a city on the west coast of Norway, plays such a big part in my book. As you are all aware of – the drs Øystein Fluge and Olav Mella, which is present here today – did a randomized, double blind, placebo controlled clinical study on the drug Rituximab in ME/CFS – a drug that wipes out the B-cells in the immune system. The results turned out surprisingly promising – 67 percent of the patients on the drug got a significant improvement – nearly all of them a major improvement.  Compared to just 13 percent in the control group. That’s a very significant result in a clinical study. It’s a small study, so this is not proven yet – but it’s very promising.

I followed their research since late 2009 – when I had just started working on my book. Why? Because even then, in the early days of my book, I understood one thing: This could change everything.

After they published their RCT in PLoS ONE, it generated a massive amount of media coverage in Norway – and also abroad. BBC, ABC News and Der Spiegel all wrote about it. But the reaction in the magazine of the Norwegian doctors union was a funny one. They wrote two editorial pieces harshly criticizing the “hype” and more or less implied that it was irresponsible by everybody involved. Some doctors commented that these results were really not that important.

Well, that’s just wrong. Yes, the results definitely need to be confirmed in bigger studies – it’s not proven yet – and the researchers have stressed that themselves. But, this has the power to fundamentaly change things. If a drug that wipes out the B-cells turns out to work in ME/CFS – it will be bye, bye to those who argue that ME/CFS doesn’t exist.

Easy as that.

Another funny thing is – this story has its parallel. When professor Jonathan Edwards of University College here in London was in the beginning of proving Rituximab to work in RA, not many people believed him either. He ended up talking to the press, because he saw no other way of getting attention and much needed funding for further trials.

Like in Norway, quite a few people in the medical establishment got angry, and the writer of an editorial in the British Medical Journal were outraged by the irresponsibility of Edwards talking to the press. But the attention led to the funding of a bigger study on Rituximab in RA, and that study proved that Edwards was right. And it ended up as a paradigm shift in RA.

In reply to the editorial in the British Medical Journal, professor Edwards wrote that a direct result of the press coverage was that research finally would be accelerated. Until then his ideas had been more or less ridiculed by the medical establishment for years.

“In short,” Edwards wrote, the journalist who wrote the story “caught the establishment napping”.

The scientists sitting in this room have definitely not been napping when it comes to ME/CFS. Some of you have been screaming out loud for 25 years, but it has been difficult waking the rest of them. But I think it’s time now.

They say that truth goes through three stages: First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident. I think ME/CFS is moving into the third phase right now. I might be overly optimistic, but after following this closely for the last 3 years, I do think I can make an educated prediction.

The point is, and I think I say this on behalf of all the patients and carers and friends and family of patients, the most important people are those who stayed in the field when it was, and to some part still is, in stage one, the ridiculing – when it was, and to some part still is, in stage two, the strong opposition. Quite a few of you are sitting here, and I want to take the opportunity to say thank you. The medical and scientific world needs people like you.

I know, because I talked to many of you, that it is not easy. The easiest solution is always to give up, to go with the flow – but that’s not really a solution, is it? 

ME/CFS is not going away.

And I think we’re finally set for stage 3. Even though ending up in disappointment, XMRV created a lot of attention and renewed interest in ME/CFS. It hit the news big time and generated momentum. The recent Rituximab finding was a big splashing surprise and has spurred new interest from immunologists and others. There is much more happening now than ever before in ME/CFS history.

1,5 million pounds were recently given to biomedical research into ME/CFS here in the UK. In the US the CFI initiative has a budget of 10 million dollars. Simmaron Research’s collaboration with Bond University – digging into the immune system. Things are happening at Stanford, at Columbia, at Mount Sinai – and other world leading scientific institutions. A lot of new top notch scientists are talking about ME/CFS – and slowly getting involved. And I know there are people in this very room that has a few very interesting things up their sleeve.

I hope this will lead to new findings, which again will lead to interest from more scientists, which again will lead to more money. My educated hunch is that we’re now in the beginning of a self-perpetuating circle. A good one – finally.

I believe that patients will get better treatment options, living decent lives. It will be a victory of science over attitudes and preconceptions. And then society will start using different words when talking about ME/CFS.

And ladies and gentlemen…if you don’t mind – in my lifetime, please.

Thank you.

11 kommentarer

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11 responses to “Scientific conference warm up

  1. Raggen

    Takk for at du la ut denne, og for det du gjør. Du er god🙂 🙂

  2. Valerie Free

    Hi Jorgen, this is a beautiful piece. Can I quote it in whole or in part in my ongoing ME/CFS book project in Canada? Thanks for keeping us all in touch with your work.
    Best,
    Valerie

    • Hi Valerie. To quote parts of it is of course free to do for everybody, but if you want to use the whole piece in a book, it’s a bit more complicated. Then I need to know a bit more about the book project first. You can contact me on e-mail🙂
      Best,
      J.

      • Valerie Free

        Hi Jorgen, I have emailed a couple times re permission for book. Can you tell me if you have received them or if they found their way to Junk? Please email me and I will try to contact you regarding this. Thanks so much.

  3. Tilbaketråkk: Scientific conference warm up | ~ME Nytt~

  4. Valentina

    Dear Jorgen,
    Thank you for the bottom of my heart and my very achy body. It’s people like you that help make a change in the world, because people like you stand up for people like me, people with ME!
    I agree with you in being optimistic, the time has come for a paradigm shift, for the undeniable truth about this awful chronic life robbing disease, the time to make real research and translate it in treatments, now if only we had more money…
    Valentina
    Longtime ME sufferer, diagnosed only in 2011 by Dr. Kogelnik.

  5. Undrende igjen....

    ‘When words stick as a stigma, it’s just not right.

    Because words matters.’

    Både jeg og min eldste datter har ME. Jeg har tidligere jobbet i spesialisthelsetjenesten, alltid med nevrologiske pasienter. Det var i jobb med unge pasienter jeg fikk en influensainfeksjon som resulterte i ME (og dette etter min tidlige trevde og x antall fødsler;) Prøvene i ettertid viste at jeg hadde hatt kyssesyken. Samme gjaldt min datter noen år senere. Aldri har jeg møtt mer sårende uforstand og mistro enn nettopp hos mine tidligere helsefaglige kolleger når det gjelder ME. At mange helsepersonell betrakter oss som ‘terrorister’ i vår søken på svar og kamp for å blit tatt på alvor er både sjokkerende, vondt og trist, og verre er det dersom man selv har innsikt i sykdom og helse generelt. Å ha god almennkunnskap som kollega verdsettes svært høyt, straks man selv blir pasient oppfattes dette ikke sjelden som en trussel av den ‘samme kollega’.. Da blir man brysomt påståelig og har for bestemte meninger om egen sykdom. En med MS har nok også gjort sine erfaringer gjennom årenes løp og har meninger om sykdommen sin. Men kalles vel neppe for terrorist.

    Words matters indeed…

    Tusen takk Jørgen for alt du gjør❤

  6. Veldig interessant tale. Leger/forskere trenger en leksjon i språk og holdninger, spesielt i forhold til kvinner. Jeg kjenner en kvinne i USA som hadde factor five leiden, og hun døde nesten av en blodpropp i lungene. Legene, også de på legevakten, mente at det bare var innbilning. Jeg opplever litt av denne arrogansen som mann også. Tror det er er mange som opplever denne holdningen fra behandlere, men det gjelder nok i langt større grad kvinner. Lurer på hvor mange liv som blir ødelagte fordi noen få legers ord har stor makt.

  7. Tilbaketråkk: 2014 | De Bortgjemte

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