British Press Coverage of Rituxan Trial in ME True to Form

It took the press in the UK (BBC and Daily Mail) almost a week to pick up the Norwegian chemotherapy-helps-ME-patients story, which is remarkable because it was known for months that the study found a dramatic (if temporary) improvement of symptoms in ME patients who had received the chemotherapy drug Rituxan.  It was also well known that this study was about to be published, so journalists cannot claim to have been surprised by the findings and even if they were, it’s not like the coverage added any material that took careful research; they basically just rehashed what has been all over the Internet for nearly a week.

The results of the £5 million PACE trial–which “found,” using fake science, that all ME patients need in order to be cured of their false illness beliefs is an attitude adjustment via cognitive-behavioral therapy and a regular trip to the gym–were touted by the British media immediately (as is every study that can’t confirm the finding of human gamma retroviruses in ME–no matter whether the studies’ methods followed the two studies that did find HGRVs in ME).  No questions were asked about the fact that many studies, all much more credible than the PACE trial, had shown that exercise is extremely dangerous for ME patients. No mention was made about the fact that talk therapy can be beneficial for all patients with a serious chronic illness; but the implication of purported benefits of cognitive-behavioral therapy in the PACE trial is that ME is not real. The fact that people involved in the PACE trial had ties to disability insurance companies who stand to lose billions didn’t give any journalist pause. The way that the PACE cohort was selected, leading to many depressed people being part of the trial, did not bother the media. Depressed people experience a symptom improvement with exercise. The British media was not concerned over the fact that the few patients that did improve as a result of cognitive-behavioral therapy and graded-exercise therapy improved only marginally and were still sick enough to meet the entry criteria for the study. None of these significant problems that would get the attention of every credible researcher, and in fact did alarm every ME researcher and clinician without a blatant conflict of interst, did not bother the British media one bit. They simply regurgitated the PACE results over and over ad nauseum.

The coverage of the Norwegian Rituxan trial paints an entirely different picture. It’s again hugely biased–still remembering that the disease used be called yuppie flu (wouldn’t want anybody to forget) and mentioning never-proven death threats ME researchers are claimed to have received from some ME patients. How are these two “facts” relevant to the current findings? The yuppie-flu label was then, and still is, offensive. It serves no other purpose than to stigmatize patients. So why perpetuate it? And even if the death threats occurred (which is a big question mark), aren’t there deranged people in every patient population? How often do you see coverage of a new HIV treatment mentioning that of the many people who have ever threatened to hurt others, some were (most likely–statistically) HIV patients? Right: never!

In the meantime, Bjørn Guldvog, Deputy Director General of the Norwegian Directorate of Health, issued an apology to ME patients in Norway:

“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.”.

Something like this has never happened before–ever!

Norway’s second largest TV channel’s coverage has been dominated by the Rituxan news and the apology. Why is there no mention of this apology at all in the British press? Could the reason be that the UK has the questionable honor of having been the leading country when it comes to abuse and neglect of ME patients? Could it be because the Rituxan ME study leaves, once again, no doubt that claims made by a few, but very influential British psychiatrists and repeated over and over by the British media that ME is a somatoform illness (imagined by the patients) are ludicrous? The British media has been complicit in wrongfully denying ME patients appropriate recognition, treatment and benefits. When are British journalists going to develop an conscience?

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24 Responses to British Press Coverage of Rituxan Trial in ME True to Form

  1. Great blog as usual…Keep up the great work!

  2. Anonymous says:

    have found this blog very interesting ….. keep up the good work, u now have a new follower x

  3. Thanks for the support, guys! I am feeling the momentum shift for us right now. We’ll have to work on keeping it up, but it feels awesome! Take that, Wessely!

  4. IHAVE3KIDS says:

    I feel the shift too. The British establishment will take longer than other countries to admit their gross negligence and ignorance but THEY WILL HAVE TO ACKNOWLEDGE THIS EVIDENCE SOON. Our time is coming, I know it is. Some of us will have a future perhaps relatively free of this illness. It’s the many thousands upon thousands worldwide, that we have lost to this illness that we must never forget – TOO LITTLE , TOO LATE FOR THEM.

  5. Yes, IHave3Kids, it is a real tragedy: so many lives lost or ruined without anybody knowing or caring. It may even be too late for us, but our kids have a chance now–hopefully!

  6. Anonymous says:

    Very good blog post. Just found it. Whether or not Rituximab pans out for all of us or those or us who are older and have been sick for a long time, it is still a tremendous finding, which bolsters our claims (and experience and knowledge) that this is a physically based disease. There are still lots of questions, pros and cons and knowledge to be gained, before this is used for everyone with CFIDS/ME. However, this discovery opens the door to more scientific understanding, more research and possibly (I say because of severe budget cuts over here in the States, and I know Britain has had them, too) funding.
    I would have loved to have seen Wessely and other CFIDS/ME-deniers’ faces when the
    news of the Norwegian study came out. If I could have, I would have jumped up and down
    with excitement at this news. Hopefully, all of this ridiculousness ends, and everyone in Britain can get validation, treatment, disability, and other benefits — and, pre-eminently, respect!

  7. Kathy D. says:

    Very good blog post. Just found it. Whether or not Rituximab pans out for all of us or those or us who are older and have been sick for a long time, it is still a tremendous finding, which bolsters our claims (and experience and knowledge) that this is a physically based disease. There are still lots of questions, pros and cons and knowledge to be gained, before this is used for everyone with CFIDS/ME. However, this discovery opens the door to more scientific understanding, more research and possibly (I say because of severe budget cuts over here in the States, and I know Britain has had them, too) funding.
    I would have loved to have seen Wessely and other CFIDS/ME-deniers’ faces when the
    news of the Norwegian study came out. If I could have, I would have jumped up and down
    with excitement at this news. Hopefully, all of this ridiculousness ends, and everyone in Britain can get validation, treatment, disability, and other benefits — and, pre-eminently, respect!

    • Hi Kathy,

      It’s funny you say that (that you would have loved to see Wessely’s face) because my reaction to the Rituxan study was: This is a scary drug and I don’t think I have the courage to take it. BUT, I would love to see how Wessely is going to try and spin this. I am surprised we haven’t heard from him yet given that it was known for months what the study found. I would have expected him to have a reaction all ready to go when the paper finally got published. He is going to have to come up with something really good this time if he doesn’t want to look like a complete idiot. My prediction is that he will dig his hole even deeper because he is so committed and has only one way to go and that is down.

      Warmly (although it is a chilly morning),
      Jeannette

  8. Kathy D. says:

    I totally agree. I want to see where the Rituximab studies go, whom they help. Is it younger people or people with a shorter duration of illness? How do very sick people do? Those who’ve had it for years? Those homebound? The chemically sensitive? What are the side effects? I’ve seen these can be very bad, even risks of morbidity exist.
    I would be too afraid to take it, given my reactions, some serious, to medications.
    I am interested in how Wessely reacts or medical doctors in the British health care system. Maybe he won’t back down, will just be quiet. That I’d like to see.
    But a round or two with real ME/CFS advocates and sufferers standing up to him argument by argument, those who cannot be intimidated — I would give nearly anything to see that.
    And especially I’d like to see it when people hand in their hands the Norwegian studies, the Lights’ study, Natelson’s findings, Komaroff’s studies, etc., etc. Deny science at their peril!
    They can disrespect us to the medical profession and the media, but defy science! That is harder to do.

    • This is exactly what gets me about a serious drug being used in ME. So many of us are so, so sensitive to medication. Valcyte, which many of use have tried (I haven’t), is a very toxic drug and we have such a a hard time detoxing as it is. When we experience a serious Herxheimer reaction, we are told that that’s just part of the deal and we need to just push through that. For some (maybe many) that works out and they get through that. But not everybody does and some people get permanently damaged. Plus, not everybody gets a benefit from Valcyte. And this is just one example. Of course, here I am getting ready to get on Ampligen, which will make me miserable for a few months for sure. So, go figure.

  9. Kathy D. says:

    Can you please explain to me what is Valcyte? What is a Herxheimer reaction?
    I am someone who has had so many bad reactions to medications over the last 15 years, and even now can’t take, for instance, the normal dosage even of Allegra or Nasarel for allergies.
    I read an interesting article about Rituximab at Phoenix Rising (is that right) about how good it is that it’s been found to help with CFS, but what pros and cons are, and how it works.
    A lot more must be studied.
    One point that was made that is interesting and could help us is why did it help some and not others? Researchers need to figure that out by much further examination of how the immune system is affected by ME/CFS and this drug. A lot can be learned I think if the researchers are committed, and these Norwegian doctors seem to be.
    The issues of what can happen if B cells are suppressed is discussed in that article, including one very serious disease.
    All in all, I think this discovery — and apparently, this drug is already used for many diseases — will lead to a lot more research, as well as studies of CFS/ME sufferers’ particular immune systems.
    Also, the issue of how certain viruses affect B cells is being studied and this will give further impetus to these studies, and hopefully, for more research funding. However, the economic cuts in health care here and in Britain and in other countries doesn’t bode well for research funding.
    Ian Lipkin’s main funding is private from the Hutchins Fund for his CFS/ME-related studies.
    Good luck with the Ampligen. Some people swear by it.

    • Happy to, Kathy:

      A Herxheimer reaction is the initial worsening of symptoms (weeks to months) when antibiotics or antivirals are taken, as toxins from the die-off of the bacteria or viruses are released. Valcyte is an antiviral that works against the herpes family of viruses, esp. HHV-6. Dr. Montoya at Stanford has done some groundbreaking research on this. Some people had a significant improvement from it, but people typically relapse once they get off Valcyte and it’s too toxic to stay on it forever.

      The Lipkin XMRV/HGRV study is also still on.

      Thanks! I can’t believe I am actually doing this.

  10. Kathy D. says:

    You’re very good at the writing and the answers.
    I think I wobbled and repeated a bit — a manifestation of my ailment. When I’m not wiped out, I can actually focus and tighten writing. But when I’m exhausted, I just don’t realize what’s happening too well.
    Yes, Lipkin’s study is still on; is that the NIH-sponsored one?
    You mentioned in another post that a CFS/ME-afflicted British MP had died after going to the gym. Who was that? When did it happen? Did it appear in the media that is what happened?
    I wonder if that person’s family sued those evil perpetrators of “it’s all in your head.”
    Do you live in Britain? Is that why you are so well-informed about the goings-on there?

    • Don’t worry. I repeat myself all the time.

      Yes, I believe the Lipkin study if the NIH study.

      Not sure how much was in the media about the British MP. I don’t really follow the British news that much. Just what gets reported here in the US.

  11. Kathy D. says:

    After seeing Harriet Washington on Democracy Now talking about the pharmaceutical industry and control of medications and prices, keeping many needed drugs out of the hands of people who need them due to cost, I am concerned that even if Rituximab turns out to be the “miracle drug,” for CFIDS sufferers, many may not be able to get it due to cost and/or lack of insurance coverage for it. I have a wait-and-see attitude about this drug, but hope the research will find out a lot more about our immune systems, what’s going on, what can offer relief, etc.

    • Yes, I said that this could be the new Ampligen: The other ME drug nobody can have.

      The patents for Rituxan are almost expired, which is why the drug company isn’t doing any trials with ME patients. Without trials, no FDA approval. Without FDA approval, you’ll have a very expensive drug that only the rich can afford.

  12. Kathy D. says:

    Best wishes on the Ampligen. I’ve read it can really help people.

  13. Rachel says:

    To Jeanette,
    I just found your blog and I am writing here because I don’t know how else to contact you. I read that you are starting Ampligen. I’m a member of the CFIDS foundation which you have on your links. They warned against trying Ampligen in their last printed newsletter this fall and they had someone who was on it and got worse write an article. Perhaps you have already thought it out and read all negative and positive things before you decided to try it. Just in case you didn’t I thought I’ed just let you know because it’s a big decision. You can contact the CFIDS foundation and ask them for more info or contact me personally and I can give you the email of the person who got worse on it (I think I have her email(?))
    my email is chaiyaATyahoo.com
    replace AT with @
    Whatever you chose to do I hope it works out for you. This blog is great and explains things v.well.

    • Thanks for this note, Rachel. I’ll email you.

    • I would not touch Ampligen with a 10 ft. pole…It is toxic, it will kill you and the company does not give a damn for their patients and they will pull the drug from you a soon as they have their data…I was suppose to be first ever in Canada on this drug and my doctor talked me out of it besides it will never get approval because their data if loaded with frauds…The first patient ever on Ampligen was Nancy Kaiser and she is dead today and get this, the inventor of the fax machine was th largest investor/owner in stock of Ampligen and he had cancer and also took Ampligen and he of course is also dead today…You are better off waiting to see more data on gcmauf…

  14. Kathy D. says:

    I just came across this interesting article by a ME/CFS sufferer in Norway. She explains the activism by a group of people there with the disease, which led to breakthroughs. However, she explains that there are Darth Vader Simon Wessely-types in Norway, too, who need to be answered. http://www.masscfids.org/resource-library/14/349

  15. I was born in the u.k. just outside London and left here as a child and grew up in canada and came back here in 2007…I will say one thing for sure and there is no doubt about that once you see 2 different health care systems on a regular basis and I truly am convinced the British medical system is 30 years behind the times and even most doctors here I speak with agree with me so I would not ever let their understanding of illness difer from what has already been proven and estabished from respected north american & european clinicians on proof that this disorder is a biological physiological complex illness and has nothing to do with malingers or somatoform issues…Peter White and Simon ‘weasle’ Wessely are actually paid by certain interests to downplay any illness that would cost insurance and governments any monies out and it will continue here…i strongly believe that ‘somatoform’ labeled patients have all the rights in the world to go out on a regular basis and donate blood and upon their deaths also their organs…I also feel that all the neglected 250,000 patients in the u.k. should go out on a regular basis and donate their blood and I am fully aware that a lot of you will not agree with this but on the other hand there is no proof thus far because of a lack of funding that any infectious disease is playing any role whatsoever…The bottom line is you cannot be prosecuted because actually this British attitude government pushes only for phycological funding and denies patients rights to an open medical system for all…May 12 th of each year should be a huge drive for filling out organ donation cards at these centres and also regular blood donations all year round until they change their sick attitudes and give this illness the funding it deserves…I know people will not agree with what I am saying and that’s fine but remember this very clearly because it is very very highly likely that the British, Canadian & American governments conspired to create purposeful bilogical warfare agents to spread amongst the populations and very highly likely now they have entered the water, foods and even ‘intentional’ vaccine programs…Do not believe these governments or these puppets they put in place because unless patients strive to fund private research by themselves it will not come from these cover-up people…Dr Garth Nicolson found a piece of the aids virus by using pcr and he already told me its also in my blood with the host of other pathogens including c. pneumonaie and mycoplasma fermentins and I would not be surprised that I will test positive also to the ciguatara (epitope) toxin and the better test for lyme tic bacteria along with very high levels of ‘plutonium’…Once all of you truly understand that these goverments are behind a massive biological campaign and they are not your friends but actually our enemies then maybe you all will decide that the route to go is to give back to society what you were given in the first place…Saddam Hussein had all these biologics and he did use them already on Iran and all the coalition forces who went to the Gulf and the fact is it was George W. Bush who sold them to him…Wake up everyone this disease is spreading and its out of control and these governments and puppets are your enemies…donate blood & organs…I will not stop my donations besides people cannot get sick from phycological disorders…There is a soldier in Montreal who just tested very high to plutonium and not sure if you people are aware that is tied to ‘alpha radiation’ and you all can see more info here on u-tube ‘discovery channel’… gulf war vets conspiracy test parts 4 & 5 of a 5 part series…As I am writing this ‘the national cfids foundation’ has sent cfs patients blood samples and funding this research with of course ‘patients donations’ and the scientists expect same ‘alpha radiation’ results…In fact the gulf war vets tested it is impossible to reverse the damages…these governments caused you all to become sick and they are fully responsible for your lost lives…’DONATE BLOOD NOW AND FILL OUT ORGAN CARDS’ gulf war illnes deployed and non-deployed are 100% cfs/fibro illnesses with government named labels…Sincerely always the full truth Aidan Walsh Southampton, U.K.

  16. Anonymous says:

    There may well be some truth in your statement, but as a partner to someone with M.E he wouldn’t want to give blood or risk seeing anyone else suffer like he does, wouldn’t wish it on our worst enemy. I am from the UK and witness all the lack of any understanding and treatment,and I am angry and understand your hurt. .

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