1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

Negative publicity on PWME - the motive?

Discussion in 'General ME/CFS News' started by currer, Sep 27, 2012.

  1. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,256
    Likes:
    1,626
    London
    IVI, that's just one service in one area. We don't know how many patients they see, we don't know if doctors mention it to patients and we don't know if they even have a leaflet in a waiting toom in any cancer clincs.

    There is a huge difference about a service being available to those who need it and ask but as an adjunt to medical treatment and a "service" being the sole offering to a patient group and intended as their only treatment.

    In normal practise I'm not seeing psychiatric services being routinely offered in any NHS clinics apart from for PWME where CBT and GET and other "services" are mentioned.

    My husband was treated for cancer by the NHS and not one doctor mentioned psychiatry. When I was treated for endometriosis and other non-ME ailments no one mentions psychiatry. When I broke a bone, once again, no offer of psychiatry.

    If it did happen, psychiatry offered commonly as part of treatment for other NHS conditions then we would all know about it.
  2. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    Excuse me if I don't expend the effort of demonstrating to you the presence of every identifiable LP service in the NHS - if you don't want to accept its existence then fine, it just makes discussion about psychiatry somewhat limiting if arguments follow only from "in my experience" positions. But whatever.

    The point about LP is not whether or not it makes psychiatric involvement in M.E/CFS acceptable to patients, it's about what the health service structures we have to negotiate with find acceptable. Pretending that psychiatry is what happens 'somewhere else' is simply not going to facilitate negotiation between M.E/CFS advocacy and service planners and providers. For those who want to read up on the 'next world' of LP services - http://www.nhsconfed.org/Publications/Documents/Liaison-psychiatry-the-way-ahead.pdf and http://www.centreformentalhealth.org.uk/pdfs/liaison_psychiatry_in_the_modern_NHS_2012.pdf - the cost/benefit proposition is likely to see what's now happening in the NHS be of attraction to many other large health service providers and commissioners.

    IVI
    Firestormm likes this.
  3. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    There’s posters from at least 6 different countries represented on these forums and I’d guess the number by readers is somewhat higher. Each country has widely differing political, research and health service structures and separate funding approaches – in that context it is not possible to come up with one size fits all proposals. My argument is that common principles apply because there is enough commonality across the national/cultural residencies of the readers of these forums to make it so, but the specifics of any activity must be tailored to the operative social and cultural conditions.

    To paraphrase “go on then, how do we do that?” as “OK what next” – having established one (others may be needed) campaign principle it is possible to start describing the kind of thing that is possible. Key to that is organisation, I’m afraid it is a dream to believe that just because people can email and tweet that the Internet can substitute for hierarchically arranged structures. The first place I would start is with existing organisations and see what co-operative efforts they may already be sponsoring. Only where there is no functional existing organisation would I see it more efficient to seek to create (another) wholly new entity.

    IVI
  4. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    Where does that leave any health advocacy ? You describe something that has no possibility of resolution – yet numerous health advocacy organisations seem to work extremely productively with medical professionals.
    I’m afraid your compass of ‘social change’ is very narrow. Many changes happen at societal levels driven by environmental, economic and indeed collective influences. The greatest single health improvement development (as measured by disease reduction) has been the institution of municipal sewerage. I don’t recall Joseph Bazalgette being appointed because of something akin to the Toll House burnings, or the Corn Law riots or the Chartist Protests. M.E/CFS isn’t Appartheid or Slavery or Universal Sufferage – it’s just a health issue, alongside many other health issues and no one outside this small world of online forums is going to take it seriously if we dress up our self interest in the language of la grande revolucione.
    The frequency with which a meme is repeated may increase its credency, but it does not make it any more true. Many of those who claim success in AIDs advocacy have written self servingly and self promotionally – not surprising for people who claim to be good at selling a story. But the AIDs advocacy as ‘disobedience’ is almost an entirely US story, and in fact if that were the only source of one’s reading about HIV the image one would get is of AIDs as a solely American saga. Globally, HIV advocacy has been multiple in character, and while ACTUP and those that shared its philosophy undoubtedly achieved attention, other organisations have worked with less noise, and I would argue often with greater effect – here’s just one http://www.tht.org.uk/our-charity . The Internet is not the short cut you seem to think it is, neither is it a route to apply pressure (on who ?) unless you think someone who matters is going to be pressured by a DDoS attack. Unpopular is just that – it leaves us with no where to go – somewhere along the way advocates need people to like them, without some basic ‘likeability’ and lacking actual political or economic power, you (we) don’t get listened to.

    IVI
    Firestormm likes this.
  5. orion

    orion Senior Member

    Messages:
    101
    Likes:
    64
    UK
    IVI,

    If you wish to respond to my posts then I'd appreciate it if you didn't chop my text up into tiny little out of context sections before replying. The paragraphs I wrote were intended to support one another, and should be treated as a single unit. It's a habit that leads to very disjointed conversations. If I was now to chop up your reply in the same manner, then we'd both rapidly lose sight of what we were originally talking about.

    Anyway, now I've got that off my chest, I'll try and deal with the points you've raised.

    Firstly, what you describe as “health advocacy” is, in most cases, little more than fund raising (not that there's anything wrong with that). If we confined ourselves to just that activity, then I'm sure our relationship with the medical profession would be entirely harmonious. However, if that's all we did, then most of the money raised would simply end up in the pockets of people like Simon Wessely, and we'd end up with more “centres of excellence” offering nothing but CBT and GET.

    What underpins our difficult relationship with the medical profession is essentially a power struggle. We (or at least many of us) are not just trying to raise funds, we're also campaigning for basic patient rights such as the right to choose our own medical treatments, and the right to a much greater say in the direction of future (government funded) medical research. That's primarily where the friction lies. Our demands are not unreasonable when you consider that it is ultimately us patients who are paying the bills. As the saying goes “he who pays the piper calls the tune”.

    So what we're asking for should not, in any sense, be considered controversial. Unfortunately, medicine does seem to attract people with an authoritarian streak. A self-serving paternalistic attitude still permeates much of the profession, particularly at the upper echelons. The very notion that patients should be allowed to choose their own treatment is still complete anathema to many doctors. Many of them see our modest demands as a threat to the power and status of their chosen profession. And they certainly have no inclination to “negotiate” with us. To believe otherwise is incredibly naive. As far as they're concerned, the only negotiation that should take place is between themselves and other healthcare professionals. This is not me being paranoid or conspiratorial. I've experienced this attitude from doctors, at first hand, many times over the years. And I'm sure others here will tell you the same.

    Whether we like it or not, there is a political dimension to our struggle. This is the elephant in the corner that the main UK ME charities continue to ignore, and is one of the main reasons why they continue to be so ineffective in promoting our interests.

    You may consider ME to be “just” a health issue but from the perspective of many sufferers (including myself) the issue is every bit as important as Apartheid, Slavery, or Universal Suffrage. I regard access to healthcare as a basic human right, and it's a right that ME patients are routinely denied.

    Incidentally, you've picked a terrible historical example in which to back up your case. The rebuilding of London's sewage network in the 19th century was motivated as much by self-interest of the rich and powerful, as by a genuine concern for the poor. After all, everyone living in London at that time was forced to share the same filthy environment, and cholera doesn't discriminate between rich and poor. And just as importantly, that particular concession to the proletariat didn't involve any actual transfer of power.

    With regards to your comments on AIDS activism, sorry, you're just plain wrong. I don't really know what else to say. You can dismiss it as a “meme” if you like, but AIDS activism is an easily provable historical fact. Many of us around here are old enough to have lived through it. It happened, it was international in nature (not that it would be any less important had it been confined to just the United States), and it was very successful.

    You're also very wrong about the importance of the internet. It's rapidly changing our society in ways that we're only just beginning to appreciate. It represents a huge threat to traditional power structures everywhere. That's why governments around the world are desperately trying to bring it under control with ever more draconian legislation.

    There's a hell of a lot more to internet activism than DDoS attacks, although I believe that is a legitimate and effective tactic to employ under some circumstances. I've already mentioned several rather obvious ways in which we can apply pressure - FOI requests, complaints to the GMC, judicial reviews, etc. We can also respond very rapidly to articles written by people such as Simon Wessely in medical journals and the mainstream media. Of course none of these things are exclusive to the internet, but they're all made a damn sight easier if you have online access.

    That's really the key point here. The internet is as much an enabler as anything else. For a start, it gives us access to a vast amount of information that would have been impractical to obtain as little as 20 years ago. And as the saying goes, knowledge is power.

    20 years ago, we were all isolated from one another, and completely in the dark. The only easily accessible source of information for UK patients was the ME association's magazine. And the information in that publication, whilst often useful, was all filtered through the eyes of just one man, which is hardly ideal. It's not that long ago that I used to go to my local hospital's library and pose as a medical student in order to obtain up to date information on the latest ME research. Thankfully, I no longer need to resort to such drastic measures as that same information, and a whole lot more, is now just a few mouse clicks away.

    In those pre-internet days, we strongly suspected that something was very wrong with the healthcare system, but couldn't prove it. We wondered why so little research seemed to be taking place. We wondered why the ME specialist we'd been referred to paid lip service to ME being a “real” condition, but only seemed to offer psychological therapies. The internet has changed all of that. We now know for a fact that we're getting screwed. We know why we're getting screwed. We know many of the key players involved. And last but not least, we can do something about it. That to me is a huge step forward.
    Valentijn likes this.
  6. alex3619

    alex3619 Senior Member

    Messages:
    6,638
    Likes:
    9,710
    Logan, Queensland, Australia
    Other health advocacy movements, with a possible exception for autism that I am aware of, can trust their researchers. We can trust most of our biomedical researchers. For one thing they don't make over the top claims beyond the evidence base. That is not true for some adherents of psychobabble, though I would not say all. This is not science by any rational analysis I can think of. I am still trying to figure out what it is. It does however give a superficial appearance of being science. Its fair to call it research though, but what kind of research and how credible?

    So how can we establish a basis of trust with psychosomatic research on ME? It isn't going to happen provided that the "science" continues to proceed as nonscience.

    Bye, Alex
  7. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,256
    Likes:
    1,626
    London
    IVI,

    I think that the point you may be missing is that Psychiatry/Psychology is being offered as a matter of course and as the only treatment in the two fatigue clinics that I have been seen in.

    Thatr's not the same as other NHS clinics for other conditions. It's a glaring difference. In the ones that have treated myself and other family members it is only offered if a patient is in obvious psychological distress and even then, it may not be offered at all.

    The thrust of the non-ME clinics has been to treat the physical symptoms of the person presenting as a priority.

    With the NHS fatigue clinics that I have been seen at the offering is psychological only.

    Trying to pretend that psychological and psychiatric services that are a possible adjunct to NHS treatment in other situations is not the same as acknolwledging that they are the only NHS treatment being offered to people with ME. The fatigue clinics I was seen in ignored the physical ME symptoms and refused to treat them. That would not happen in a cancer clinic. It's a huge difference.
    Valentijn likes this.

See more popular forum discussions.

Share This Page