Other Lancet Lies

[iamnotmyillness]

I have been receiving an email newsletter from a website called Mad In America which is a non-profit group that is focused on instituting a change in the psychiatric care and treatment in the United States. The largest issue they take with the current mental health treatment/care approach is that it should be focused on the experiences of actual patient's lives and real life experiences rather than lead by the pharmaceutical industry and their non-scientific "research". This is something I've been stating about the medical community as a whole for quite some time.

Recently there was an article published centered around a study which claimed it had conclusive evidence that people with Attention Defecit Hyperactivity Disorder (ADHD) have altered, smaller brains than those without the disorder. The study was published and made headlines worldwide. Essentially, the data was contorted and then significant parts were completely ignored in order for the desired outcome to be reached. The authors of the study stated that ADHD is a disorder of the brain; the proof is in that people who are afflicted with it have smaller brains as shown on MRI's. They lied, omitting the fact that patients DID use medication specifically for their ADHD symptoms and therefore it's highly possible if not actually likely that the medication is responsible for the physical effects on the brain size.

A detailed analysis was written and published by an author in Mad in America outlining the evidence and fully explaining exactly why the study was completely false. The author then wrote a letter asking Lancet Psychiatry to retract the study. I bet you can guess the response. Refusal. The original study was published on February 17, 2017. However, after the creation of an online petition two weeks ago, just two days ago the lead author of the eighty-one co-authors for the research paper did state that there was an error regarding the IQ scores noted and an update will be publised in May. But the rest of the publication stands. Apologies for not going into further details in my article outline to explain the significance of the IQ scores, but my brain is draining and glitching too much right now to be able to share a better synopsis. Hopefully this does a good enough job to send anyone interested on the trail and perhaps others might be able to help me out in filling in the missing details and connections.

I figured that others here would be interested in this due to the PACE trial debacle. It makes me wonder how many other false, non-scientific, and perhaps even disputed research claims may have been published at the laughable Lancet looney-tunes land.

Edit: I wrote the rest of this post yesterday but wasn't able to post. After I posted I decided to do a quick search for other Lancet controversies and came across this article which mentions a few others which I did find prior to finding the specific article. It turns out there have been at least a few rather big controversies including one surrounding the MMR vaccine (Measles, Mumps and Ruebella) and a statistical study announcing the death toll of the Iraq war at 100,000..

Wishing you all love, energy, understanding and a future...heck, a future that's not this.

I don't mean that last part to sound so dismal. I'm just wishing for the warming, nurturing and often overly bright sun to mix with the life-giving, powerful, beautiful rain to form a rainbow.

 

[iamnotmyillness]

I also found a list of controversies on the Lancet Wiki.

I'm not sure if anyone within this community is a Wiki editor, but I know it doesn't take much to become an editor; anyone can. Not to go off on a tangent, but I read a fantastic story about an editor who was twelve years old when she first stared. I am just not very versed in the PACE trials since I've not been able to get my brain going enough to follow the trails and absorb all of the information. What I'm trying to say is, someone with the knowledge might want to add a follow-up to the PACE portion now that the freedom of information act FOIA has finally been granted and the data has been released.

The Wiki entry currently ends with a comment quoted from the editor of The Lancet declaring his critics to be, "'a fairly small, but highly organized, very vocal and very damaging group of individuals who have, I would say, actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients." I just think that it would be much better to end the section with a follow-up declaring that the information was released, it shows the data didn't support the claims and the fallout from the publication has been significantly damaging to the patient community world wide.

 

[JES]

Wiki is more a place for referencing to other pieces of information, so it's not the place for long stories like those on the Tuller blog posts (great as they are). That said, the short section on PACE could indeed need some updating. The article also misses one of the biggest recent Lancet scandals, the Macchiarini one.

 

[iamnotmyillness]

I wasn't inferring that it should tell the full story. However, in order for me, or anyone for that matter, to be able to write the summary it helps to know the information fully and correctly.

I was willing to bet that there are a number of issues which aren't mentioned. I would think that there would be some things discovered with a simple search and others turned up with deeper digging. That's one of the drawbacks of modern technology; nobody seems very focused on providing any sort of tools to make it easier to sync, update and link bits of information which can appear in limitless locations. Instead they are narrowly focused on their own little proprietary project.

 

[Woolie]

@iamnotmyillness, I think you make some very valid points. People who are researching into a disorder - or studying any subgroup of people - are custodians to the group they investigate. They have a responsibility not to actually make life worse for those people.

It shouldn't just be about whether the findings are solid or not - and anyway let's be honest, most of this brain mass stuff is pretty questionable - researchers should also consider how their findings will impact on the people afflicted.

You wouldn't expect to get a study published that shows black people have less grey matter volume than white people - irrespective of whether your findings are "solid". Because that would not advance our thinking and it would harm the people that are the subject of the study. Most people wouldn't see the decision not to publish as silencing the truth, because they understand that any such conclusion - or what it implies - could easily turn out to be wrong in the long run, and the potential for misuse in the meantime is huge.

The ways in which the mentally ill - and the sick in general - have been miscast and misunderstood through history is enough to make anyone's eyes water. And there's no reason to think that we are no longer vulnerable to making those mistakes, that we have somehow suddenly "got everything right".

I think in medicine and psychology, ethics approval for any large research project should, at the very least, require consultation with an advocacy group, and if possible, should involve at least one patient co-author (depends on the disorder of course, wouldn't be possible in a study of long-term coma patients, for example!). I know this is not perfect - we all know the PACE trial sort of did that by using a puppet group - but maybe its a start.

 

[iamnotmyillness]

Thank you for your comment @Woolie I whole-heartedly agree! Ethics seems to be mostly missing from modern medicine.

I very much want to create a Patient Advocacy Group which would lobby, fight, advise and in general stand up for patients. It makes me feel literally queasy each time I am handed a new form at a Dr's office which I must sign in order to receive treatment that effectively states that I don't have any rights but the physician has the right to violate my privacy, treat me as less than human and put their fears above all else.

It's long past time for patients to organize and take back our rights.