“Worsening symptoms are signs of improvement”


A terrible story out of the Burzynski clinic, the story of Amelia S., told by Bob Blaskiewicz.

3-year old Amelia S. lived in Reading. In about September of 2011, Amelia started displaying neurological symptoms–wobbliness and a trembling left hand (often drawn into a fist). The family brought her in to the hospital after she started falling down. On Jan 30th, 2012, she was diagnosed with a brain tumor, and on the 1st of Feb it was determined to be a large tumor on the brainstem. Surgery revealed a grade 2 diffuse astrocytoma, which the family was given to understand meant that the core of the tumor was likely grade 3. Doctors were unable to remove much of the tumor, only the 4 bioppsy samples.

Amelia’s medical team was honest. The benefit offered by radiation and chemotherapy, on average, could be measured in weeks. These are bad, bad tumors.

So they went the fundraising and Burzynski route. It didn’t work. The particular point of this story is that

it tipped skeptics off to a pattern in the stories that patients at the clinic were telling, that their worsening symptoms were signs of improvement. As you will see, this is a story that Burzynski’s patients have been relating for decades.

That would be a very effective way of getting more money out of people, wouldn’t it. Bad symptoms are signs of improvement; X thousands of dollars to continue the treatment.

The symptoms we are seeing right now are a direct result of the tumour, hopefully due to it swelling, and the steroids will fix this. They are also what we would see if it has grown.

It really, really looks that her wellness is linked directly to how much steroid she is receiving. And here’s another example of something that is…desperately, desperately wrong at the Clinic. The patient is being told that the tumor is swelling because of the treatment. How is it that only at the Burzynski Clinic that getting worse is indistinguishable from getting better? Second point: this is a tumor on the brainstem. If a possible side effect were swelling of the thing pressing against the brainstem, you’d expect that to be on the informed consent form, right? The type of thing that would be among the “serious side effects,” right? It’s not, at least not in a version of the consent form used after Amelia had started ANP…

It wasn’t working, but the Burzynski clinic was spinning it as if it were, and the newspapers helped it do that.

At this time, Amelia was returning to school (she had already been going to nursery school on treatment). And the way it appeared in the press, and certainly how I and other skeptics read it, it was being promoted as, “See? This treatment is working enough to let this little girl go back,” a human interest story (The Mirror’s coverage was profoundly disgraceful–suggesting UK doctors “refused to treat” Amelia, whereas when you look above you see that in fact: “The doctors here are being very cooperative – but I must emphasise that they are recommending different treatment (chemo) and we have consistently turned this down”), and by god it was good to hear that Amelia was having a great time, but there’s a lot more going on than is contained in the articles.

H/t Bob Blaskiewicz on Twitter.‏

Comments

  1. says

    That is sick, how can this person be allowed to rip people off still. Temptation is to blame the family and the people who helped them raise 200K, especially reading their account of the “therapy” on the website that is still up. But as a father I don’t doubt I’d grab at anything to save my 4yr old daughter, they are the victims in this. Almost makes you wish there was a hell for Burzynski to burn in.

    Also sickened by the lack of journalism from the reporters who promoted the fund raising and hence the therapy. But given its the Mirror… Hoping for change there is a vain one! Why did the local paper not do a little due diligence? We really need better science reporting…

  2. Richard Smith says

    Homeo- and naturopaths are also really into the whole “worsening symptoms means the treatment’s working” spiel. Amazing how their treatments, and the untreated disease just running its course, both seem to follow the same path (-ology?). I had a really bad cold and, apart from occasional symptom relief, I didn’t pursue any sort of cure. The fact that the cold got worse meant that my lack of treatment was truly effective and sure enough, within a week or so, it was completely gone. Sadly, most cancers, left untreated or incorrectly treated, run their course far less benignly than the average cold.

  3. Sili says

    Also sickened by the lack of journalism from the reporters who promoted the fund raising and hence the therapy. But given its the Mirror… Hoping for change there is a vain one! Why did the local paper not do a little due diligence?

    Why would they? Which story do you think gets more readers? More readers = more people to advertise to.

  4. MJ says

    I first learned about Burzynski on respectful insolence and man no matter how many times I hear this stuff it always turns my stomach. From what I’ve heard Burzynski keeps avoiding the consequences of his actions through a lot of legal loop holes and reliance on apathy from the FDA. Hell not long a go the texas medical board did what was meant to be a serious review of his practices with the threat that his doctor’s license could even be taken away if there was enough evidence against him and he got off scott free. Supposedly this is because he doesnt actually treat the patients, he visits them once then gets other doctors to do the actual treatments and this made it ‘impossible’ somehow to hold him responsible for whatever lies people are told during treatment. This lines up with what I’ve read from other patients who have spoken out against him have said, he sees you once and them you don’t see him again unless he thinks he can use your case as a success story. Patients who don’t show quick improvement never see him again.

    Perhaps be warned, you may be visited by burzynski trolls, they occasionally gang up to blather unhinged screeds all over articles like this. They would be amusing if cases like Amelia weren’t the end result of their attempts to fill the web with endless praise for this fraud and silence anyone who contradicts him.

  5. johnthedrunkard says

    The notion of ‘healing crisis’ is rooted deep in pre-scientific medicine. Note the ‘pre.’ That is why real doctors who practice real medicine don’t talk like that. Quacks do because their ‘earthshaking discoveries “they” don’t want you to know about’ are endless recycling of the same old drivel.

  6. Amy Clare says

    Interesting, Burzynski was the subject of a BBC Panorama special on Monday night (3rd June). The reporter met and interviewed the guy, went to the production facility where they make his useless medication, and talked to pissed off doctors in Texas who have to treat all the sick kids who fail to get better on the ‘therapy’.

    The saddest story was one English couple whose daughter died of her cancer, but her mother was convinced that the Burzynski treatment gave her more time and said she would’ve ‘kicked herself’ if she hadn’t tried it. So even when the treatment fails Burzynski still wins. :/

    The programme should still be viewable on BBC iPlayer for a week at least for viewers in the UK (and possibly elsewhere too).

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>