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The Blame Game: A Way Forward?

Blog entry posted by alex3619, Jan 27, 2012.

This is a detour from my three-quarter written blog on another aspect of philosophy of science - but not much of a detour. It still addresses a topic on my long term agenda.

We spend of lot of energy blaming people who do various things we don't like. In particular, private complaints about proponents of biopsychosocial (BPS) approaches including CBT/GET are a favourite passtime - I understand why, but we make up most of the people listening.

This has some value, as it chips away at the image that these BPS claims are in any way acceptable or without controversy. However, it also holds us back.

While we gain some ground with people who already know a bit about the topic, and are sympathetic to us, we lose ground with people who are ill-informed about ME and CFS issues.These people may be susceptible to the rhetoric used about the ME community by some media and BPS sources.

Professor Malcolm Hooper has made some exceptional efforts at addressing this issue, and I extend that praise to many who support and assist him. It is not enough. Patients in general and the ME and CFS communities in particular have long been denied a say in issues on health. The irony is this appears to be in violation of the spirit of biopsychosocial approaches, though I am sure many will deny this. We are stakeholders in the medical outcomes, just as much as governments are, and we deserve representation and respect.

One of the problems we face is that we are making allegations based upon minimal evidence, and to some this can be presented as evidence of our irrationality, especially if they are unaware of the history of this disease and how we have been treated.

If someone does something we do not like, often we attribute some nefarious purpose to it, based on prior history of that person. This may or may not be correct about a specific instance, but its hard for others to see that without being aware of the history, and lets face it, most are unware of the history.

If person Z does action A, then we often claim some reason for this based on past experience. This is very hard to prove. To show pattern, we have to show this person has done A,B,C and so on.

There is a way forward. I am attempting, step by step, to esablish a roadmap for that.

Now while I cannot prove that a particular psychiatrist or researcher has done something completely unacceptable, despite some evidence that they have, some things are easier to establish than others.

If the person is a medical practitioner then they have to adhere to medical ethics or face reprimand. If they are an academic researcher, they have to adhere to academic ethics (from their institution) or face reprimand. In both cases they are expected to adhere to sound research methodology.

There are many reasons why medical practitioners have a profound lack of knowledge on ME and CFS issues. One is they have almost no time to really keep up-to-date. It has been said that the closest a doctor is to being up to date is right out of medical school. Over time they fall further and further behind. This is reality, I do not wish to berate doctors for this, although I think that institutions could do more to improve the situation - and no that doesn't include institutionalized evidence based medicine, though I intend to address that at another time. So if there is any blame on this specifically, it is most appropriately directed at the institutions and systems designed to keep doctors up to date. To claim that ME is not a real disease, has no physical problems, or has no abnormal pathology on tests, is not much different to AIDS denialism. This is an untenable and ignorant view in the current decade, and needs to be eradicated.

Doctors are also reliant on established information sources. This includes medical journals, and in the UK it includes NICE (National Institute for health and Clinical Excellence). If there is entrenched bias on the science from such sources, the doctors who rely on them could be severely misinformed.

They are also guided by their professional bodies. In the UK that is the General Medical Council.

There are many academic institutions involved also. In the UK one of these is King's College in London.

I think we are going about this the wrong way. There are checks and balance in society. We have been attacking the visible problem. We should be attacking the systemic failure of the normal checks and balances. We should be making this their problem. We should be making it their problem in such a way that not addressing it puts them in disrepute.

Professor Malcolm Hooper has done some things to address this issue. I think the ME and CFS advocate community could do more. I think it is time for us to do more.

Lately I have seen a trend on Phoenix Rising and other advocacy sites that I highly approve of. We are becoming more sophisticated in our approach to these issues. In particular we have very long technical threads discussing the science from many points of view, and recently a thread was started to go back and review older evidence for things we might have missed.

I have called the paper from the PACE trial a Rosetta Stone. The glaring errors (especially in the design and execution of the study) and easily misunderstood representations in the paper and press statements are a pointer to what we need to look at. Quite a number of people have worked on this, and in particular I would like to thank Tom Kindlon for his work on re-assessing harms in the PACE trial.

Suggestive evidence is not enough unless a pattern can be established. Clear breaches in logic and unfair representation of issues can be challenged on scientific grounds. This has been done, though more is yet to be released, and I do think we could make more of unfair representation in media communications based upon the facts and anything that can be directly inferred from the facts.

Medical ethics require fair treatment of patients, but also fair treatment of prospective patients who receive treatment based upon research which is highly reliable, and a requirement to not bring the profession into disrepute. These are their Achilles' heels.

Scientists rely upon their scientific reputations. So do their institutions. A prolonged pattern of apparently misleading statements and science can undermine the reputation of an institution. They are responsible for their own member's conduct, particularly if they fail to identify and correct issues over years and decades.

Now various researchers in the BPS approach have conducted research that many of us regard as highly questionable. There are however accepted standards in science that give them some protection, and justifiably so. Any individual breach could simply be a mistake. A pattern of breaches in standards is a cause for concern. But for who? Who is responsible? Who is the watchdog who is supposed to say, "enough, these matters need to be addressed"?

Who are responsible? Their respective institutions and oversight bodies are responsible. If an institution misses a breach of standards, that could be called an oversight or error, or even allowing the individual the benefit of doubt. If, however, they fail to address many similar breaches from many people, on many occasions, year in and year out over decades - that is a different problem. It is strongly indicative of a systemic failure of the oversight body. They should also be called to account.

We should be assembling clear and factual statements of issues that require investigation. Where there is a pattern of apparent issues we should not be so much claiming a breach of standards, as claiming there is sufficient evidence to investigate a breach of standards.

Such statements should be directed at every regulating and standards body involved, from research colleges to medical boards, from government departments to the World Health Organization. If necessary the same statement should be sent to multiple organizations.

If or when these relevant bodies dismiss these statements as not worthy of investigation, then that particular body should be made to explain. If they fail to explain, adequately and in a timely fashion, this fact should be disseminated widely to other bodies, organizations and media. If the organizations responsible for adhering to standards cannot function adequately, we should be calling for their overhaul or for them to be completely scrapped. Those complaints should go to the next raft of supervising organizations. These complaints are also valid if the oversight body claims it has no responsibility on these issues - that is just passing the buck, and implies they have no relevance at all.

Now I haven't said much about the media in the UK in this blog. I have not seen much evidence of fair, balanced reporting in a widespread fashion in the UK, but this is hard to prove from isolated instances. This is a fundamental failure of journalism, and it is not limited to the UK just most obvious in the UK. I think that might require another blog some time in the future. It is a similar story for the peer review process in journals - it certainly needs to be investigated.

So expect me to be hard on individual claims of misconduct or misrepresentation that are made about many involved in BPS for ME and CFS. I don't want vague claims. I want the kind of evidence that will bring down institutions, end careers, and discredit BPS so badly that it will force a complete re-evaluation of the science, perhaps a complete paradigm shift.

In other words, I want rational research, fair treatment for patients in medical matters and beyond, and a better standard of medical and social care.

Bye, Alex
alex3619

About the Author

I am a long term ME patient with many complications. While I have pushed research advocacy since 1993, I became political around 2009. My current project is a book called "Embracing Uncertainty". Uncertainty in medical science seems anathema to too many doctors. "I do not know" is something more doctors should be honest about.
  1. alex3619
    kellylatta66@gmail.com just posted this to co-cure:

    Science Isn't Golden
    Matters of the mind and heart / Psychology Today

    by Paula J. Caplan, Ph.D.
    Patients Harmed by Diagnosis Find Their Voices
    Victims of psychiatric labeling file ethics complaints.

    http://www.washingtonpost.com/opinions/psychiatrys-bible-the-dsm-is-doing-more-harm-than-good/2012/04/27/gIQAqy0WlT_story.html

    Here is part of the co-cure commentary:

    "Yesterday and today, in what appears not to have been done before, a
    number of them are filing ethics complaints with the APA. Very early
    this morning, I filed my own complaint as an "interested party" who
    has for more than a quarter of a century seen from the inside the way
    the DSM people play fast and loose with the science yet have somehow
    managed to convince many professionals and much of the public that
    their manual is scientifically grounded, and during that time I have
    heard from many hundreds of people who have been seriously harmed
    and not helped in a stunning array of ways because of getting one or
    more DSM labels."

    It is hard to fight the powers that be, but I bet a million ethics complaints per violation will change the system.

    I have yet to read the full Washington Post article, I just woke up and have to subscribe to read it, maybe later.

    Bye, Alex
  2. alex3619
    Hi Tania, in an official complaint, to official representatives, naming individuals is entirely OK in my view, I am just not sure about making those names public, the laws on that might vary country by country, even state by state. However, I am thinking we may need to have a statement attached to every letter, complaint, email etc. we send: "All replies will be made available to the public, please consider this in writing your reply." This passes the buck to them, which I kind of like. Bye, Alex
  3. taniaaust1
    We have to show lower regulating bodies are not capable, interested or motivated to make change before we can really drive it home to the governments. Otherwise they can say "take it up with NICE" or "take it up with the General Medical Council".



    Nods...

    This is why Ive started to make public what various government orgs are doing in my case including at times naming the individuals Im dealing with at the orgs. I dont know if I can get in legal trouble for telling what is going on but I'd be willing to say the same in court about what is going on if they tried to stop me from publically telling it.

    Actually a court case would be good if they tried to stop me from speaking out as maybe then the media attention would be drawn to what is going on as far as gov orgs and ME/CFS goes
  4. alex3619
    Hi Merry, the problem with modern journalism (as opposed to old school journalism) is that they have no time or budget or mandate to do proper investigation. The trend for cut and paste journalism is a strong budget saving measure in times when traditional media is under threat from the new media, but it means the quality of their reporting is down, which means discerning readers might give up on them.

    When I said "ultimately the media oversight is ineffective or minimal" this is about the UK primarily. Those media outlets that still do in-depth investigative journalism are another issue entirely, but they are becoming rarer.

    The Science Media Centre is on my short list of organizations to look closely at. That will have to wait till other things are sorted out first though. I am very happy to see others investigate this. An in-depth report on the Science Media Centre in relation to ME should be produced at some point, by someone. I know there have been several long commentaries on this from parts of UK advocacy, but we need something that is specifically targeted at failings in the SMC.

    Simon Wessely is not doing anything new. He has repositioned himself many times. This is not in itself sinister or devious or whatever, its normal in science to do that. The more interesting story is why he feels it is necessary to reposition himself. The science of his older claims is under heavy attack, and does not explain most of the hard data.

    I am proposing a campaign targeted at all levels of regulation in society, they all need to be addressed. Government is near the top, the people are above it, but reaching the people can be difficult. This has to be done in order. We have to show lower regulating bodies are not capable, interested or motivated to make change before we can really drive it home to the governments. Otherwise they can say "take it up with NICE" or "take it up with the General Medical Council".

    I am also suggesting we investigate which if any bodies in the UN are relevant, including the WHO. They might not be able to intitiate change, this is not about that. This is about creating increasing political and international pressure so that irrational old-school practices are a distinct embarrasment to the UK government and UK institutions. This problem should have been sorted out decades ago ... and they are still fiddling while Rome burns.

    On a non-governmental level, this is about making it clear to academia and the medical profession that a travesty of medicine has been unfolding for decades. The severe loss of reputation that this could induce in the medical profession is a goal of this. So its not just about governments, this is not a heirarchical structure, its about pressure everywhere that does not relent and is based on hard facts.

    Some of what I am suggesting for the UK is also valid in other countries, and some of what I am suggesting is complicated by my poor knowledge of UK governing bodies and regulations.

    Bye, Alex
  5. Merry
    So you are building an argument that the ME/CFS community should focus on pressuring governments, target health agencies and their directors?

    I don't understand your first sentence: "ultimately the media oversight is ineffective or minimal." Journalism is an area of particular interest to me, and every day I'm critiquing (in my head) how stories are told and how headlines are worded. And what stories aren't being told, stories that would be in the public's best interest to hear?

    I find it mind-boggling that Fiona Fox has acquired as much power as she has. Why does "science news" flow through her Centre to be fed to the British media? She has this power, and yet the average citizen in the UK knows nothing about her or her Centre. How has this situation arisen? Where's the enterprising investigative reporter to introduce her to the public and reveal the workings of the Centre? This is a story that is definitely in the interest of the public to know.

    What are the means by which we dismantle a propaganda machine? I must say that I do see evidence that both Simon Wessely and Fiona Fox are repositioning themselves (Simon Wessely, at least, rewriting his bio) as important research gets done that counters their efforts, and this repositioning suggests the beginning of the end of their long campaign to marginalize ME sufferers and keep them from receiving the best care possible.

    But, if I understand you correctly, your interest is in holding governments accountable, so I'll stop hammering on this media issue and leave you in peace to pursue your line of reasoning. Best of luck.
  6. alex3619
    Hi Merry, ultimately the media oversight is minimal or ineffective. So its a government issue in my view ... and the government is partially answerable to the people (though not fully). However we have to establish a case, then show an attempt to avoid or deny blame, then we can escalate the politics. I envisage a wide ranging complaint network, and this would include the UN agencies like the WHO. This is not just about making complaints though. This is about making targeted complaints, and not letting go like a pitbull with a bone. That is one of the things I am working on.

    There is a difference between responsibility and accountability. This is something I am still thinking about. If I were more politically savvy this might be easier. I have a wider plan than I have so far discussed, but its going to take time for me to sort it out. My first step is to review the criticisms others have been making on these issues with respect to very specific things. I am working on it.

    One of the things I think we will have to do, and I envision allies from outside ME advocacy if we do this right, is to identify those responsible, but force accountability. They wont come to it willingly. The way to do that is not to set our own complaint structure, but work with existing complaint structures in academia and medicine that are already targeted at BPS, and show that our concerns fit the existing bona fide complaints using historical and published evidence.

    To markmc2001, there is more than enough material for many books. Its more than one person can do. I think I can show one of two things in some targeted biopsychosocial research, but can't prove either one, only that it has to be one or the other: collusion to misrepresent, or severe dogmatic verficationism such that they are incapable of dealing with the facts. That is where I heading. Either there is a violation of scientific standards deliberately, or there is a violation of scientific standards due to severely biased methodology. I can't see a third option just yet that fits the facts, though I am looking for others.

    Just to make one thing clear though: enforcement of a return to standards will not be due to direct action by us, it will be because we have established to the wider scientific community that serious derailment of the scientific process has occurred. The reputation of everyone involved with be damaged if much of this can be proven, and that will induce people to change how they operate or force them out of the field.

    Bye, Alex
  7. Merry
    Thanks, Alex, for your efforts, but who is Simon Wessely's employer, King's College, answerable to? Who is Fiona Fox answerable to? Who monitors what goes on at the Science Media Centre?
  8. markmc20001
    Sorry Alex3619. I am a little overly obsessed with this stuff and should write my own book. Don't want to mess up your efforts.

    Can't wait to see how you dissect it and what you come up with. I'm sure it will be interesting.

    Markmc20001.
  9. alex3619
    Hi Tania, the difference in the situation about what is happening to us as individuals is that there are recognised agencies that are involved with specific responsibilities. Yes, they will pass responsibility on to others - the "not our problem" syndrome. In that case we don't say, oh, they've failed, you say oh, they failed, this is gross negligence or whatever (based on the facts of the case) and make sure they know they are now on the list to be investigated.

    No one individual can do this. It also cannot be done if we use unfounded allegations. However a community of advocates, global, can do it I think. Moreover we need a structured way to do this, to drive it home. That is what I am working on. The due date will not be for at least six months, probably 18 months, and possibly some years. I am hoping though that Rituximab will be shown to be curative in the Phase 3 trials in which case the best action for advocacy will be to make sure governments make it available to all.

    Bye, Alex
  10. taniaaust1
    I agree completely it is a systemic failure and as such.. we cant really lay all the blame on ones such as bad doctors.

    If or when these relevant bodies dismiss these statements as not worthy of investigation, then that particular body should be made to explain. If they fail to explain, adequately and in a timely fashion, this fact should be disseminated widely to other bodies, organizations and media.

    Thing is things are so pass the buck that nothing ever gets changed... one org will blame another, while the other blames the first org. Im currently once again in a piggy in the middle situation (this time with getting home help) but the complaints system fails too as everyone finds the situation too confusing.

    As far as media go... they seem to want to stay out of things as its all too confusing for them or they just dont want to know.

    I dont know if you've read my post about what has happened now with the home help Ive been being assessed for. They FINALLY realise I now need it (I couldnt walk and was collapsing all over the place when the guy had his last home visit) but they say it may take up to 5mths to sort out who is responsible to fund it.

    The disability org is trying to say CFS isnt a disability and a health org probably should fund my home help... while the other org is apparently saying no CFS is a disability and hence disability org should fund as they believe CFS doesnt come under as a health issue but rather is a Disability.

    Im just the poor stuck piggy while they just pass buck back and forth like been happening for years (and no media will take on my story and Ive also complained using the new government complaint system but other then aknowledging my complaint within 24hrs of me making it... Ive recieved no follow up at all and dont know how to follow it up).