How can we get the new biomedical consensus to stop the BPS treatment of patients ASAP?

[Sasha]

@justy (and @aimossy) raised this crucial question on the "science" CMRC conference thread. The conference was hugely successful in the dominance of biomedical research and a strong consensus that ME is a serious organic disease.

This topic needs its own thread so I'm copying posts over. I hope people will pick up the discussion here (the original thread is intentionally quite narrowly focused on a discussion of the science).

 

[Sasha]

@Jonathan Edwards thank you for your response to @Tuha that was great to read!

It really does make me wonder along similar lines to @Sasha questions. It makes me wonder what you could picture for us in 5yrs possibility wise?

But I also wonder what we as patients need to do or keep doing to help it all along. Part of me thinks if ever there was a time to push and capitalise it is now! I wonder what we need to do that will have the most impact on the medical profession and science arena. Is there anything that you know has impact that we could do given we cant get out.

I do realise in a way that these questions are a bit ridiculous given we can not read into the future and we would have got further a long time ago if any of these were easy. I would also direct these questions to @charles shepherd as well. You both can see from the other side of this I think. I understand if you both choose to not try and answer my question and will not be offended.

 

[Sasha]

I would say: Just keep telling us what it feels like. All this shouting has finally been heard - Prof Holgate said so. There may be one or two who still do not want to hear but the rest of us are listening.

 

[Sasha]

Too brain fogged now to make any meaningful contribution, but I am very happy to hear the news of how seriously this is now being taken, an dhte good news that treatments could be around a (farily long) corner.

However, my concern is that this news needs to urgently filter down to the local level, to health care trusts and to Doctors. There are a number of people in Britain today with very severe M.E who have been sectioned and held against there will in psychiatric hospitals where they are not given adequate care, because they have been given the label 'somatic or somatoform or conversion disorder'

Even the NICE guidelines are not being followed in these cases, as individual doctors and Hospitals are allowed to treat patients as if it where a purely psychological disorder. People with very severe M.E are so often overlooked by doctors and researchers as they are too ill to be seen or studied.

I really want to know what we can do about this. I would like to hear the researchers who are now taking our disease so seriously admit that these patients can and do include those who are so ill that they can never leave a darkened, quiet room. Who are so sick that they cannot sit up, speak or be touched more than fleetingly. Who are so sick that any tiny extra effort can set them back years, so that they cannot type and are totally locked into a hellish world.

 

[Sasha]

This need is urgent.

Is there any talk of this amongst international researchers?

I strongly feel that they are the the only ones who have the power and authority to change the minds of the medical profession etc the only ones who they might listen to.

Obviously bio medical research is essential and is what will really change things for us all down the line and I am very grateful indeed to all those researchers like Professor Edwards who have come forward to help us but I feel the international research community needs to do more to improve things for patients now, the suffering can be reduced now.

If only researchers would stand up now, united as one, to state unambiguously that the scientific evidence clearly shows this is an organic disease, it is not caused by patients wrong illness beliefs etc, that that view is scientifically untenable and the care, treatments, and financial support for patients needs to reflect the scientific reality.

 

[Valentijn]

Maybe if patients start suing their past and present BPS practitioners (AND their institutions) for negligence, malpractice, intentional infliction of emotional distress, any financial or physical harm done, etc?

They call themselves experts, and there's an abundance of medical literature proving that their approach is wrong and even harmful.

 

[Sasha]

@Jonathan Edwards - @aimossy asked you earlier what patients could do to capitalise on this strong biomedical consensus which is new for the UK, and you responded, but @justy is raising the important question of what scientists can do.

She's right - scientists, not patients, have the clout and the access to decision-makers. What should our scientists be doing, bearing in mind the damage being done to patients right now by the BPS school?

It shouldn't be necessary to wait until we have new treatments. New treatments aren't the issue with this particular question - it's stopping this harmful treatment as soon as possible that's important right now, before other PWME have their health irreparably damaged by it. Changing public perception of our disease as soon as possible is also enormously important, both to remove the terrible burden of the stigma that we live under and to get them to start donating money to our research charities.

 

[Daisymay]

Sasha said:

She's right - scientists, not patients, have the clout and the access to decision-makers. What should our scientists be doing, bearing in mind the damage being done to patients right now by the BPS school?

It shouldn't be necessary to wait until we have new treatments. New treatments aren't the issue with this particular question - it's stopping this harmful treatment as soon as possible that's important right now, before other PWME have their health irreparably damaged by it. Changing public perception of our disease as soon as possible is also enormously important, both to remove the terrible burden of the stigma that we live under and to get them to start donating money to our research charities.

Absolutely, but the only way this will happen I think is through the scientific community speaking out. Patients have been so effectively vilified by the psychiatrists and SMC we are not listened to. This needs the authority of the research community to come together to speak out in our defense.

When you think about it, the psychiatric hold on this disease is much more tenuous than we may think. It is completely dependent on the medical professions/public being kept unaware of the existence of the biomedical research, research which invalidates their view.Successfully inform the medical profession/media of the scientific evidence and the psychiatric paradigm should fall.

 

[OverTheHills]

Sasha said:



Absolutely, but the only way this will happen I think is through the scientific community speaking out. Patients have been so effectively vilified by the psychiatrists and SMC we are not listened to. This needs the authority of the research community to come together to speak out in our defense.

When you think about it, the psychiatric hold on this disease is much more tenuous than we may think. It is completely dependent on the medical professions/public being kept unaware of the existence of the biomedical research, research which invalidates their view.Successfully inform the medical profession/media of the scientific evidence and the psychiatric paradigm should fall.

(my bold)

We patients have the numbers to support said scientists to do that with press releases etc (either through the charities or virtual organisations like PR). The scientists would need to be prepared to 'rock the boat' of the convenient (for the Establishment) consensus, it would not be risk free for them.

 

[Kati]

Would a press conference talking about the conclusions of the conference that just happened be appropriate? Since the majority of the scientists there agreed, then it is time for the world to know.

This would likely put the Science Media Center in an uncomfortable position considering who is leading the show, however it is time to put them to the test and to see if the empereur has clothes or not. There are a few journalists who could help us (Sonia Poulton being a potential one for instance)

 

[WillowJ]

(my bold)

We patients have the numbers to support said scientists to do that with press releases etc (either through the charities or virtual organisations like PR). The scientists would need to be prepared to 'rock the boat' of the convenient (for the Establishment) consensus, it would not be risk free for them.

I looked into press release, and the usual way to do it is to pay a wire service hundreds of dollars. This is not impossible, but it is not simple.

Alternatively, it seems some have had limited success emailing releases directly to news stations. This is a "put in lots of effort and hope for the best" method.

 

[Kati]

It is an opportunity for the attending physicians and the charity hosting the conference to shine. The window of opporitunity for this is quite narrow, but it has the potential to be powerful. There are not many of them in the UK, just saying.

 

[alex3619]

I have been having this debate on a private FB forum. In particular I have been trying to develop an action plan.

There are two parts. The first is this is NOT just about ME. Psychogenic claims and interventions are an issue globally with many groups. We need an ME-independent advocacy group that links to professional organizations trying to make a change.

The second is that we already have a model for what to do. The expert letter on the CCC and IOM issues is a guide. If we can make a very brief, and I mean VERY brief, focused letter, not diverting to other issues, and then advocate to get every doctor and scientist we know, especially if we know them personally, to sign it, then we will have a powerful advocacy tool.

Do expect the scientists and doctors may want a different letter. This is about galvanizing them to action, not dictating that action.

Individual legal action is an option, but its a long rocky path.

 

[user9876]

One of the big issues is the overall attitudes of the medical community (often GPs) who encounter ME but don't have a huge interest or time to dig into the research. In the past they have probably seen the odd thing about CBT and GET.

So one thing that would be good is an article about recent research directions in something like a GP's magazine. It would take someone who is good at writing about this stuff to do and perhaps some experts names to help get it in and be seen as a serious article.

I think there needs to be a long process of drip feeding interesting stuff to a wider medical audience than just the research community so that when breakthroughs are made they are widely accepted.

 

[Sasha]

One of the big issues is the overall attitudes of the medical community (often GPs) who encounter ME but don't have a huge interest or time to dig into the research. In the past they have probably seen the odd thing about CBT and GET.

So one thing that would be good is an article about recent research directions in something like a GP's magazine. It would take someone who is good at writing about this stuff to do and perhaps some experts names to help get it in and be seen as a serious article.

I think there needs to be a long process of drip feeding interesting stuff to a wider medical audience than just the research community so that when breakthroughs are made they are widely accepted.

I agree - that's an excellent idea.

 

[Dx Revision Watch]

Another paper out of Manchester around primary care dx, which includes some of the researchers from the FINE Trial.

Full text, here:

http://www.biomedcentral.com/1471-2296/15/44

Overcoming the barriers to the diagnosis and management of chronic fatigue syndrome/ME in primary care: a meta synthesis of qualitative studies

Kerin Bayliss, Mark Goodall, Anna Chisholm, Beth Fordham, Carolyn Chew-Graham, Lisa Riste, Louise Fisher, Karina Lovell, Sarah Peters and Alison Wearden

"In order to address barriers to the diagnosis and management of CFS/ME in primary care, the limitations of the biomedical model needs to be recognised. A more flexible bio-psychosocial approach is recommended..."

and another recent one from Alison Wearden (again, full text):

http://psycnet.apa.org/journals/hea/33/9/1092.pdf&uid=2014-35249-003&db=PA

The impact of significant other expressed emotion on patient outcomes in chronic fatigue syndrome.
Band R, Barrowclough C, Wearden A.

This "over-involved" "significant other" is off to express some emotion...

 

[A.B.]

Overcoming the barriers to the diagnosis and management of chronic fatigue syndrome/ME in primary care: a meta synthesis of qualitative studies

That is some psychiarrhea. Irrationality and passive-aggressive behaviour masquerading as "evidence based" treatment and helping patients. How can these people be so out of touch with reality?

How can mentally sane people:

1. Question the biomedical model because it lacks objective tests to identify some pathologies.
2. Present the biopsychosocial model as better alternative despite it lacking objective tests for every single condition it claims to be relevant for.

Absence of evidence is not evidence of absence (except in psychobabble land apparently).

Patient-doctor relationships are only poor due to psychological interpretations in the first place.

And lying to patients won't make things any better.

 

[chipmunk1]

How can these people be so out of touch with reality?

Psychholes can do anything they want to do..

 

[biophile]

Here is a re-write:

"In order to address barriers to the diagnosis and management of CFS/ME in primary care, the limitations of [the severe lack of funding to the] the biomedical model needs to be recognised [addressed immediately]. A more flexible [The limitations of the] bio-psychosocial approach is recommended [must now be recognised] ..."

Failing some major breakthrough in etiology or treatment, or a massive scandal which puts intense media attention on the problems with the current practices of psychosomatic/psychological medicine, there isn't going to be a silver bullet solution to our problems. It is more akin to changing the direction of a huge oil tanker.

 

[Roy S]

This "over-involved" "significant other" is off to express some emotion...

I'd say admirably involved significant mother.