After listening to the IOM public meeting, after reading about what is happening to Karina Hansen and Justina Pelletier, and after poring over comments on blogs, forums, and news articles, there is no doubt in my mind that we are at war. It is a war being waged against ill children, and against their mothers and fathers, who have been slapped with unverifiable, and outmoded, psychiatric diagnoses in order to strip them of their civil rights. It is a war against people who suffer from complex, debilitating, expensive illnesses. It is a war in which our enemies are ignorance, laziness, vested interests, venality, disinterest, and lockstep thinking that places institutional welfare above the needs of individuals. It is a war against the weak, waged by the strong. This war has been instigated, and is being perpetuated, by our most powerful health institutions:
The continued refusal by NIH to fund meaningful research into ME, which essentially hamstrings our ability to initiate trials for treatments,
The CDC’s 30-year perpetuation of a ridiculous name that allows doctors to dismiss us (as well as anyone else who presents with “fatigue”),
The DSM’s expansion of “somatoform disorders,” which provides the justification for labeling us as neurotics,
The possible inclusion of “Bodily Distress Syndrome” in the WHO ICD -11 , a move which would effectively reclassify CFS, FM, IBS and other complex illnesses as psychiatric disorders,
The creation of panels – the IOM and P2P – which are given the unlimited authority to create and disseminate information across the entire spectrum of health care, but which have no expertise, no experience, and no knowledge of the illness they are charged with defining.
In the context of war, these can only be considered onslaughts. Why are they doing this? The answer to that question is actually fairly straightforward: money. As a result of the recent economic downturn, cash-strapped governments with extensive social welfare programs, such as national health plans, are cutting back on social services. The same holds true of insurance companies, which, in the US, always put profits first. Medical care is very expensive, which means insurers, whether they are state or private, will seek any means of reducing medical reimbursement – let’s say by reclassifying diseases which are complex, but not well-established in the medical mainstream, as psychological conditions. (The remedies for anxiety disorders – GET, CBT, antidepressants – are much cheaper than Ampligen.) That’s the macro analysis. On a local level, people who are part of institutions with long-standing positions and policies have a stake in making sure the boat is not rocked. Their advancement within an institution is dependent on their ability to do only those things which are consistent with what has been done before. The primary goal of any institution is to perpetuate itself. On a micro level, there are a number of people in influential positions (e.g. Simon Wessely) who have a personal stake in defending the status quo, some of whom have reaped substantial benefits (e.g. a knighthood) for doing so. What should we do? There are two trains of thought as to how we should proceed: 1) “If you can’t beat ‘em, join ‘em." This is the approach taken by the Let’s Get It Right Group. The idea is to work within the framework of existing power structures. This is called “reform.” 2) “If you can’t join ‘em, beat ‘em.” This is the approach taken by Jeanette Burmeister, and others. The idea is that HHS has repeatedly let us down, and if we work within their rules, they will do so again. This approach is often called “revolution.” Arguments about the merits, and pitfalls, of each of these approaches – reform vs revolution – have raged since human institutions were formed. And they rage within our community today, with acrimony on both sides. But must we fight amongst ourselves about the single most effective strategy? If the institutions – and individuals – waging this war are hammering us with everything they’ve got, why can’t we do the same? Weaponry We have a large community, one that provides us with a broad range of talents, expertise, and experience.
Why not make good use of the entire range of what our community has to offer?
Those who have rapport with government institutions can exert pressure from within. The IOM presentations were a good example of this. Each group’s statement is now part of public record.
Those who have experience with litigation can place legal pressure from without. Legal pressure is essential for any change in the US. It is the way our entire system works.
Those who are adept at public pressure can organize demonstrations (May 12 is coming up!) Public demonstrations and events are a great way to gain the attention of the media. And, because this is the 30-year anniversary of the Incline Village outbreak, now is the time.
Those who can write should take advantage of the huge opportunities available on the Internet. Public comment on news articles is particularly effective, but there are also review sites, emails that can be sent to public officials and representatives, and old-fashioned letters to the editor. (Even if they don’t get published, editors always read these to gauge the interest in certain topics among their readership.)
The power of social media is something that cannot be denied. When hundreds of people tweeted about the inclusion of “Bodily Distress Syndrome" in the WHO ICD-11, WHO responded with a statement. Even if you can’t get out of bed, you can tweet, you can “like” posts, you can sign petitions.
There is no institution, here or abroad, that is unaware of the power of public outcry.