Discussion in 'MEpedia' started by Jonathan Edwards, Aug 10, 2018.
awkward wording on my part, as it appears to exempt myself. I also have made errors.
This is incredibly irresponsible.
We have loads of anecdotal evidence. This is not at all scientific hence we can use science to develop an evidence base yea or nea. This is what gave us the Rituximab trials, several anecdotes. Even in failure we can learn and achieve a great deal but to not try guarantees we cannot succeed. It can also lead in new directions, thanks to those trials ME is taken more seriously in several Nordic countries and has lead to some research money (iirc). Also thanks to this research other researchers are now doing research in parallel areas in case they might bear fruit, research that would not have happened otherwise. These successes came from a failed trial.
Finally if some people have this instead of ME then suppressing data is acutely harmful to those individuals. No one should jump into a dangerous surgery without cause, but pretending there is no evidence so lets move on is the type of mentality that gave us PACE, for decades we were ignored and treated as below contempt. Those fraudsters stepped into the vacuum and we are still suffering from their lies.
We can either wait decades or centuries for a biomarker that no one would look for if we take down all theories or we can risk many failures till we get to success. I personally think a rather small percent will actually have CCI as the cause of their symptoms but for those who do if they don't find out because we were of the mindset that until something applies to everyone we won't talk about it then they will find when we have an ME treatment that they wasted years or decades. By following this taking down logic we would have not had the Rituximab trials at all. Obstructionism is not the answer. Nor is calling it diligence.
I disagree. If MEPedia is to be taken seriously in the scientific world as a responsible site that provides accurate information with direct relevance to ME and backed up with scientific evidence, then anecdotes should not form the basis of any articles. (Logically, to do so there would have to be an article citing anecdotal evidence for LP curing ME, with links to forums where success stories are shared).
The only way I would want such subjects to be included on MEPedia would be perhaps in the form of a simple list of treatments that have had anecdotal claims of recovery from ME/CFS but that have not been researched and should therefore not be recommended outside properly conducted clinical trials.
And I think there are some inaccuracies in the CCI article (I'm not an expert, so can't be certain of this). The fact that the only references listed on the CCI article are a PR thread, where presumably individuals have shared their personal experiences, and an EDS site which may or may not have any relevance to ME/CFS says it all really.
I agree that page should be taken down until it can be re-written more responsibly and accurately and its relevance to ME beyond a few anecdotes is more firmly established by research.
MEPedia is a terrific resource for information on the history of ME, and personalities involved in the ME world one way or another. There are, I think, serious problems with non scientists trying to write science articles. Sometimes it is better not to cover a topic than to include it on the basis of anecdote.
Science works by collaboration. A leads to B leads to C. In fact i would not be able to have this conversation if not for this principle.
Science also looks for evidence and attempts to prove or disprove a theory. As i explained in the other thread i just replied to there is a huge difference between CCI and LP.
Then all theories would need to be taken down. As long as its presented as a theory and not as a cure, not having information available for people to work with means we won't move forward nearly as easily. IIRC Jen had stated she has been contacted by scientists who read the ME page at MEPedia, which afaik preaches no cure at all. Just the knowledge about ME sparked interest. A page of theories can also spark interest from people outside the field or in related fields.
am tagging @JaimeS as MEpedia is part of her remit.
see the MEpedia forum here re contributing
"Guidelines for writing science in MEpedia
Science writing should be about what we know to be true, so far as our current understanding of science can tell us."
One of the main problems, from my point of view, with MEpedia and other wikis in general is that very early drafts are published immediately as is, and there's usually nothing that tells the reader that the article is in fact at an early draft stage, or that it hasn't been properly reviewed yet, that it's still a work in progress that hasn't been edited or thoroughly fact checked etc.
Drafts are not necessarily a problem, but it is can quickly turn into a problem if the reader wrongly thinks that they are reading a solid well-researched and fact checked article when in reality it's a very early draft.
I have to agree with @Alvin. Science is about looking in many, many directions, may they lead to dead ends or not.
Hi Inara, I wondered about the policies of MEPedia on this, as I agree it's good for scientific researchers to be made aware of anecdotal evidence and encouraged to set up properly regulated trials to test that evidence. The question is, should that be a role for MEPedia on its science pages.
So I read the guidelines @SlySaint linked to above.
It is clear to me from the guidelines that the science pages are intended as providing summary reports of published scientific research.
There may be a place for MEPedia to list as yet unresearched anecdotal evidence to alert researchers to possible research topics, but it is clear from their own guidelines that that this is not the purpose of the science pages.
Quite right. And then taking a sledgehammer to your own ideas, and welcoming others to do so, to see how they withstand rigorous examination.
From the closing words of @JenB's TED talk:
At the moment we don't know, we have some observations and some anecdotes, which is great. Present those anecdotes by all means, and let's get examining. But in my view it's far too early to be establishing a cause-and-effect narrative, or making any claims, and publicising them widely.
With Rituximab, whilst the anecdotes were being responsibly and scientifically examined, irresponsible doctors were already peddling it to desperate patients at high prices. It could well be that none of the current CCI patients or their doctors / surgeons would dream of recommending surgery for ME, but that won't stop the unscrupulous doctors who were quick to jump on the lucrative Rituximab bandwagon and their ilk from crawling out of the woodwork and adding CCI to their list of "things to consider".
Medical professionals range just as widely as any other sector of the population in terms of ethical standards, woolly thinking, incompetence, greed, complete lack of conscience bordering on the criminal, etc etc. We don't have to look far for confirmation of that. I certainly don't have to travel far to find a few widely respected ME "experts" who offer all manner of expensive nonsense to patients who don't seem to get any better year after year, and often deteriorate.
There are also patients who will travel the world trying all sorts of expensive treatments from whoever will provide them. Some of them end up a lot worse than they were, or dead.
So can we do the examining first, without rancour, and widely publicise it later if it turns out to be a thing? Otherwise it seems like a bit of a cart before the horse situation, and surely we've had enough of those already?
I concur...except with...
Personally, I want the information, even if anecdotal and/or n=1, so I can make an informed choice, while also waiting for the scientific process.
Others may prefer to ignore anecdotal experiences while waiting for the scientific process.
Both are valid approaches.
A few weeks ago in a meeting of patients with a provincial health quality org, some patients wanted access to their test results asap - others preferred to wait until their appointment with their doctor to learn of the results.
We concluded that the latter's approach should not preclude the former's access to information.
So I don't think it is an either/or situation. It is a personal choice situation: I can choose to examine the anecdotal info, or I can wait for formal research.
But the choice needs to be mine.
I also wonder how many more millions of people would have died of AIDS had we waited for the scientific process to run its course before access to life-saving treatment was made available.
I cannot help but wonder what the formal difference is between an anecdote and a case study. Level of detail or scrutiny? Who is doing the scrutinizing? Length of write-up? Whether it gets published?
In terms of utility, is one necessarily better than the other outside of the name?
If as a patient, I write up a detailed anecdote about me, n=1, and it is professional in format, is this less meaningful than a sloppy case study published in NEMJ simply because of the pedigree of the NEMJ?
Because as far as comparing my pedigree to a researcher's, I arguably have a perspective and accrued experience and history from which to speak that is peculiar to my community - and, in many regards, every bit as valuable as a Harvard degree when it comes to my disease.
I agree it's good to have access to anecdotal evidence so long as it is presented as such and not extrapolated with claims beyond the evidence.
And so long as it's not included as part of a science section of a website like MEPedia that says:
Guidelines for writing science in MEpedia
Science writing should be about what we know to be true, so far as our current understanding of science can tell us.
And whose science section guideline specifically requires the information to be sourced from scientific journals and named medical and science websites, as MEPedia does.
By putting a page within that subsection of MEPedia whose sources are a forum thread and a blog, that discredits the whole site and misleads readers.
What constitutes ‘loads of anecdotal evidence’ and when do anecdotes become worthy of becoming scientific evidence? I think anecdotes are helpful in aiding researchers to decide what to study (this happened with Rituximab). Without large controlled research studies you can't come to a conclusion that a causal relationship exists. The studies related demonstrated that with Rituximab, no causal relationship existed.
Research is a carefully planned, controlled, systematic approach to finding causal relationships. Anecdotes are not which makes them both unreliable and unscientific.
There is a lot of crap out there - anecdotal reports that Lightning Process cures ME is a huge one. If the publishing of anecdotes on MEpedia is not irresponsibe, where does one draw the line related to anecdotes?
This is why the following statements are very important.
I think i have explained my position quite well throughout this thread.
Indeed you have. I guess I just have a different take on the importance of anecdotes and their use. I think in terms of responsibility vs irresponsibility, it’s early days for any kind of definitive statements related to a relationship between CCI and ME especially on a site like MEpedia.
Some posts discussing MEpedia science articles in general were accidentally moved with the ones about CCI in particular. They have now be moved back here and just the CCI ones copied or moved to the new thread.
MEpedia articles on neck surgery for ME (CCI, AAI, chiari, stenosis) and intracranial hypertension
Patients turn to quacks because mainstream medicine treats ME as a mental illness, not because patients believe ME is multi-system illness.
What you state Dr Edwards is pertinent. Yes, a parent is likely to seek all the help she can if she reads this is a multi system disease. We did this too; physicians encouraged it also. The treatments led to more suffering, but at rare times, some a little hope, which was then dashed.
On the other hand, if the statement reads that no one knows what ME is at the moment and there is no treatment, I'm not sure the outcome is good either. I know of several young people who attempted to end things: suicide.
As for ways of coping that in my long experience is a tricky business. How do you help someone cope when they are tortured all day, with unrelenting toxic feeling, flu feeling, malaise--and this goes on ad infinitum. Last week I asked my GP is there was anything to give for this flu feeling. Of course, she said, No.
Unrelenting torture brings all sorts of things: panic, hysteria, violence, psychiatric symptoms. Then there is the horrid loneliness this illness brings, in addition to robbing young people of anything normal.
So, people try whatever, out of desperation.
It seems to me that with this sort of illness, the scientific and medical establishment should move far more quickly than they are at present. But most often they just don't seem to absorb the hell that living with this really is--yes, there are exceptions. I can tell that from the ME conferences, if I compare them to the AIDS conferences which I followed a long time ago.
I just finished reading a very interesting discussion about MEpedia on Twitter. It's a long one, so I'll only quote a few tweets. You can click on any of the embedded tweets to continue reading the rest of the thread.
To be honest, this new vision is not one I share, so sadly I most likely won't continue contributing. I'm not a fan of lumping lots of diagnoses together, mixing facts with anecdotes and speculations etc. It feels very far from what I thought MEpedia is/was working towards becoming.
It’s for all of our comorbidities but we don’t yet have a conceptual frame for what to call them. MCS and mold illness (which may it may not be MCAS), chronic Lyme and autism are also “on topic.”
I gave up on this MEpedia early on because it seemed to want to be rigorous yet made no attempt to be so. Effectively Jen B is saying it is for any pseudoscientific meme you can connect to ME floating around the internet and alternative medicine practitioner blurb. What some might call a treasure trove of unhelpful beliefs. The sad thing is that so much of this stuff has been invented to satisfy the purses and egos of practitioners who have no idea what they are doing. There is no doubt that the patient community have a huge role to play in setting the record straight on ME, but if anything this seems to be going in the opposite direction.
Separate names with a comma.