Prof Hooper's complaint to DWP re classification of ME as psychiatric disease

[Enid]

I think Prof Hooper and a few advocates in the UK have worked "smartly" over years - gradual changes are visible even if not at medical "grass roots" level yet.

 

[ukxmrv]

IVI

How about some examples of how patients fought "smarter" and were successful that we could base a campaign on or model ourselves on?

We have the recent examples of the HIV/AIDS patients who did fight. They fought them head on and were not diplomatic. That would seem to be proof against your arguments.

So, please let us know that your ideas are for the "fight smarter" part - specific ideas as we all want change here

It's easy to be critical of anyone, so if you have better ideas, speak up.

 

[In Vitro Infidelium]

IVI, in my opinion you have made some strong points about strategy and about polarising forms of engagement, but can I ask you to concentrate some effort on framing some positive alternative suggestions please?

My ambitions in posting online have been limited to promoting some questioning of the current tactics and behaviour of those who claim to be advocates for the interests of M.E/CFS affected people. Of course mine is an I dont like it position, to which the response well if you can do better is inevitable; my answer to that is that given we have a collective identity (same disease label) we are all affected by the images projected by activity carried out in the M.E/CFS name. For that reason its logical to start with an argument about why if you are in hole you want out of, digging deeper is a bad idea. And from a wholly pragmatic perspective, one cannot anyway become more effective without giving up ineffective activities.

But if you just post here to criticise the strategy that other advocates have adopted, then ironically your approach on this forum seems to be quite closely analogous to the very approach of patients writing letters criticising 'science'/the BMJ that you are objecting to..

.

Yes !!! Except for the fact that there is a fundamental difference between the relationship and expectations of the differing sets of parties in the two cases. In this forum there is no external measure of qualification and no exercise of validation based on that qualification neither am I seeking change on the part of resource controlling, societally empowered individuals and institutions. If I were addressing the audience of the BMJ, The Lancet DWP etc, and I actually wanted to influence that audience so as to effect societal level change, as opposed to, for example, simply grandstanding, then I would deal with the communication in a very different way.

If you don't actually object to the same things that others object to then your suggested methods may be effective in your own terms, but not in terms of achieving the kind of changes that others want to see.

The principles of human communication are broadly consistent in all circumstances and achieving change is not determined by the demands of the objective, but the demands of the objective within a given context. My argument is that those outside of the larger M.E/CFS organisations, who are seeking to advocate for the cause of M.E/CFS, consistently fail to take account of (or even have the most basic understanding of ) the context in which they are seeking influence. I also think that the larger organisations have been overly reserved, inward looking and lacking in confidence and ambition, although on balance I consider the big four in the UK and US to have done as well as any comparable organisations could have done in the last two decades.

Also, it's not clear to me yet as to what you actually see that is wrong with the current approach to ME/CFS in the UK: what you would like to see changed and why.

I would never predicate a process of representation, advocacy or promotional campaign based on what I would like to see. Even if one were to be representing, advocating for, or promoting oneself, a personal starting point engenders almost certain failure to achieve objectives. A key starting point has to be what is conceivably achievable at any given point, allowing that in a case such as M.E/CFS the process is subject to rapid change and any campaign must therefore be adaptable. PACE provides a good example, the misguided attempts to discredit PACE served only to discredit M.E/CFS advocacy, while the study itself demonstrated that what the objectors to PACE were most concerned with -CBT and GET - are not cost effective interventions for M.E/CFS. But those who previously disputed the legitimacy of PACE are unable to argue that PACE shows this cost ineffectiveness because their position would be absurd. This isnt a matter of being wise after the event the war against PACE was flawed because it did not take account of the objective within the operative context it was a dumb war.

So perhaps it might help people to better understand where you are coming from if you set out a view on what you think should change and how that change might best be achieved - it might help other members to see what objectives you have in common with them, and then other forum members can either agree with your approach, or critique it, as they see fit.

Id suggest people not bother about where Im coming from and concentrate on what Ive written without their defending positions theyve already adopted. Irrespective of whether anyone would agree with me over objectives, my critique of the inadequacies of M.E/CFS advocacy is sound, its up to others whether they see any value in examining the failures of the current groupthink, or whether the security of those entrenched views and the inevitable failures that are entrained by that group orthodoxy, are more rewarding for them.

This thread isnt the place to present a personal manifesto but Ill think about putting up a blog entry on PR to cover some of that territory, however open forums are not the best places to discuss specific detailed strategies.

You've hinted at the idea of approaching politicians rather than science and the BMJ, but that's the only hint I can see in your posts of a suggested alternative approach, and of course plenty of campaigning at the political level is ongoing as well so it's not an either/or. And it does seem to me that when campaigning at a political level, we hit a different brick wall where the scientists and senior politicians agree that this is a matter for scientists (read psychologists) to decide, so we seem to be in a Catch-22.

Ive not suggested that engagement with politicians is an alternative to engagement with researchers or science bureaucrats, the point is that its a different audience with different priorities. The catch 22 only exists if a) there is perception by either the politicians or the scientists/bureaucrats that contact with each is motivated by an intent to attack the other or b) one fails to acknowledge the established realms of responsibility i.e dont ask the politicians to take a scientific decision and dont ask the scientists to take a political decision. Whether the current formats of political engagement are the most effective available, or they are being pursued in the most effective way are open questions, however the answers to those questions are subject to a basic question of achievability. What is not in question is that attacking (or being seen as attacking) professionals who advise politicians or provide public service in some form, will affect the view that politicians take on the attackers, almost always to the detriment of the attackers ability to influence said politicians.

IVI

 

[Esther12]

Id suggest people not bother about where Im coming from and concentrate on what Ive written without their defending positions theyve already adopted. Irrespective of whether anyone would agree with me over objectives, my critique of the inadequacies of M.E/CFS advocacy is sound, its up to others whether they see any value in examining the failures of the current groupthink, or whether the security of those entrenched views and the inevitable failures that are entrained by that group orthodoxy, are more rewarding for them.

Well indeed - anyone who judges an argument on the basis of who is making it, rather than the evidence and quality of thought supporting it, should be ashamed of themselves.

 

[max]

IVI - have read your wisdom - thanks for all the great advice, no wonder we have got nowhere.

I will not continue due to the forum police and their gaffa tape policy.

 

[In Vitro Infidelium]

It's easy to be critical of anyone, so if you have better ideas, speak up.

Formulating meaningful criticism is actually rather difficult. In contrast I would argue that it is very easy to come up with good ideas, however turning ideas into reality is where the challenge lies, and it is the conceptual gap (between idea and effect) which, IMO afflicts much of what is attempted or claimed as M.E/CFS advocacy.

How about some examples of how patients fought "smarter" and were successful that we could base a campaign on or model ourselves on?

There are no off the shelf models that could be effectively applied to the generality of M.E/CFS advocacy and Im afraid that it is thinking in such terms that underwrites many of the existing problems. If we were to think in advertising/PR terms then its the difference between establishing and maintaining the authenticity of a Brand on the one hand, and driving up monthly sales of a Branded product, on the other. M.E/CFS advocacy is a long haul project it is all about establishing a Brand that is seen by all significant audiences, as being valid, trustworthy, authentic and authoritative. Short term gains (the equivalent of upping monthly sales) can certainly be achieved through targeted activities, but my argument is that these must always be subservient to the strategic demands of the maintaining the validity of the Brand.

We have the recent examples of the HIV/AIDS patients who did fight. They fought them head on and were not diplomatic. That would seem to be proof against your arguments.

I dont know what HIV/AIDS patients achieved but there is neither equivalence of the historic situation of HIV/AIDS patients and the current situation of M.E/CFS affected people, nor has 30 years of effective HIV/AIDS advocacy been characterised by a rejection of diplomacy.

In media terms AIDS was sexy it involved every hot button a copy editor could wish for sex, death, fear, (more sex), celebrity (more sex), politics and religion. In addition AIDS arrived at just the time when Gay Rights advocacy in the developed world had achieved a level of maturity, and with a reduction in some of the previous societal oppression of gays and lesbians, there were signs of a growing lack of internal cohesion within the movement. No one in the Gay Rights movement would have wanted HIV/AIDS to appear, but in the early 1980s, HIV/AIDS did provide a new uniting focus for one of the most effective campaigning movements of the late 20th century. HIV is not a gay illness, but the influence of the Gay Rights movement on the campaign to validate all the issues of concern around HIV/AIDS treatment, research, health care, safe sex etc, was profound. ActUP was undoubtedly part of that but only a part. And more significantly when comparing HIV/AIDS to M.E/CFS, all HIV/AIDS activism was supported by a huge population of well people. The banner wavers, sit down stikers, marchers etc were not in the main patients but predominantly, young, able bodied, and in employment, numbers of whom were working within the processes of government and in the media.

In campaign terms the images provide a stark tale 10,000 bright young things stopping the traffic in a major city to protest about a doomsday illness, is an event that creates its own validity, and even helps to validate more easily questioned activities paint throwing, office invasion etc. Match that against a half a dozen over thirties waving banners with messages that almost no one understands and about which even fewer people care.

 

[ukxmrv]

IVI,

Have a read of "and the band played on" and you will see that diplomacy was what they did not do. That's to answer your previous question. They rejected diplomacy and fought well before it became a fashionable cause. I think it would be an important history for you to learn as it goes against your earlier arguments.

Lots of words but no real ideas there again. Once again please offer come constructive comments on how people could do things better rather than sniping from the sidelines.

 

[Roy S]

Previous effort by the Professor:

http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm