CBT- Jen Brea Twitter

Absolutely - if you have other medical issues that accompany your ME/CFS then you 100% should get the proper treatment for that. And it is very true that once one has an ME/CFS diagnosis then doctors often lose interest in testing/treating other conditions. My only point was that one needs to make clear that these treatments are for the co-morbid condition - demanding them 'for ME/CFS' has an imprecision that can be twisted into supporting the 'anti-science/vexatious/nutty ME patients' meme.
At the moment we have no good treatment options strictly for ME/CFS which isn't massively surprising given how little we know about its underlying mechanics.

 

It really, really is. I'd like to pretend that means I'll stop using it but sadly I'm like one those cocaine-addicted lab rats, seeking my next dopamine hit.

 

Hi, Jennifer, Thanks for coming to comment. Not a case of thinking you are stupid, you are clearly not stupid, but in this instance showed great lack of judgement in including Michael Sharpe in your thread. I understand that having a large amount of Twitter followers makes using the medium more fraught but I can't honestly see how this has anything to do with your impulse to include Sharpe - and less harmfully, perhaps, Dr Hammond, in the manner in which you did. It is anathema to me and many UK patients that you would reach out to Sharpe like this, all things considered.

I do get your passion - and your knowledge about these other treatable conditions, which may or may not be related to ME, is very useful. I get you don't want them missed. But the fact is it is the *removal of behavioural treatments for ME* which is at the forefront of NICE. The damage of GET/CBT is so all consuming, it is hard I guess to be prioritising other treatments/tests like the ones you describe. It seems like you almost have the priorities back to front. If all else was equal, sure, demand these other things, but sadly the situation is that we are still fighting hard for respect and dignity and decent care for ME *alone*.

Of course, the confusion of criteria for ME has a lot to do with misdiagnoses, other missed conditions, but I won't get into that.

Yes, of course, conditions like POTS should be tested for if symptoms demand it. I have orthostatic intolerance but not full blown POTS, though I have never been tested. I am not honestly sure I could endure a tilt table test. I use a walking stick when able to go outdoors though it doesn't help me stand longer, just means I don't need to find a fence or lamppost or wall immediately to lean/sit on if I ever have to stand for more than five minutes.

I have never had a brain MRI, maybe I should have one, I get the horrible pressure in my head often, but just put it down to ME and something I have to bear. It feels like part of PEM to me, the pressure in my skull. Often postexertional.

It is really hard to know in depth the ME politics of another country, I don't fully understand what has gone on in the USA though I try to educate myself by reading Osler's Web - and more recent literature. I do understand that you won't have the same grasp of the profundity of harm caused by the Wesselys and Sharpes and Whites as we do. But the harm is so profound, it is sometimes hard to bear and articulate.

I am as you know unusual in having had the neurology diagnosis of ME in 1984, with muscle biopsy & EMG & immune profiling, so I have seen my own personal narrative of illness disappeared and rewritten by the bps scoundrels in the 1990s. I have not suffered harm from GET as I would/could simply never engage in it and thankfully have never been offered GET/CBT for ME, but many pwME have been harmed and also children with ME. You will have heard accounts of harm at the recent Scottish Parliament event. One woman actually spoke briefly of the problems Sharpe had caused the patient population (he used to be based in Edinburgh).

Michael Sharpe accompanied Richard Horton (Lancet) on an Australian radio broadcast in 2011 and Horton spun the whole militant patient narrative, it was distressing to listen to the pair of them. Sharpe said in defence of CBT and GET: '... you can actually make some changes in your illness, you don't just have to lie back and wait for time, it's worth a try'.

'You don't just have to lie back and wait for time' is simply contemptible.

And let's not get into QMUL not releasing the PACE data. And I don't need to remind you of Australian patient Alem Mathees sterling and gruelling work in this respect (I understand he is still extremely ill from the exertion). Or of the many other UK patients/advocates - and also in Ireland, Tom Kindlon, for example - who have worked their socks off to challenge PACE and NICE, at great expense to their health.

Your tweeting Sharpe seemed to make you unaware of all of above. None of us is infallible, and the world will not stop turning because you tweeted him, but please do learn from this. Also, don't flatter him by making him think he could ever be part of the future vision of ME, no one on with ME in UK can or will ever trust any of these PACE doctors again.

Thank you. Sorry comment is lengthy but was hard to be concise.

 

Thank you @Nasim Marie Jafry for articulating so well why some of us were so concerned that you Jen reached out to Sharpe. I do appreciate Jen all you do and the great achievements of Unrest, but I agree with Nasim that tweeting Sharpe was an error of judgment.

 

Thanks, Anniekim, Yes, I have given this a lot of thought - and examined why I was so upset at the 'inclusive' tweeting of Sharpe, so I responded above. This, of course, has nothing to do with the achievements of Unrest, which remain solid.

 

Trying to collaborate, find common ground, etc with Sharpe et al undermines efforts to improve the situation for patients. They do not care about the well being of patients as their actions clearly show.

 

And I would just add @JenB that all the above comments, far more informative and better elucidated than I ever could, are very sincerely meant, with the best of intentions. But I'm sure you appreciate that.

 

Can't be arsed with what Sharpe thinks about us to be honest. He's not the one we've got to convince.

 

I don't think any of us can be arsed with what he thinks, in truth - but it was fact of such a high profile activist appealing to him that was problematic IMO. And he has previously wielded great power and harm, especially as a PACE PI. Who knows what he might have up his sleeve.

 

Whatever he has up his sleeve he's gonna do regardless of anything we say to him. The man isn't bothered with patients or facts.

 

I am sure you are right, which makes it inexplicable that anyone in ME advocacy would appeal to him.

 

It's pointless, I agree. I just don't see it as harmful or anything, what is Sharpe gonna do to us that he hasn't already done?

 

Isn't one of the reasons GPs have readily adopted the (erroneous) psychogenic view of ME/CFS, and its associated ineffectual treatment with CBT/GET, is because doctors don't like to feel powerless when confronted by a patient with an illness; so by embracing these psychological views and treatments (even though they are quackish), it puts the doctor back into the control seat.

Doctors like to be able to categorize the causes of a patient's illness, and then prescribe some treatment; the psychogenic view of ME/CFS, although largely incorrect, allows GPs to do this. So the psychogenic views give doctors the comforting (although false) feeling that they are in command and control of the situation. I think we have discussed before on Phoenix Rising that this is one of the reasons for the popularity of psychogenic views among GPs.

I have always thought that if you want to weed out these psychological views and treatments of ME/CFS that lots of GPs go by, you have to offer doctors something else to replace them. In that respect, if there are some pharmaceutical treatments that may at least help a subset of ME/CFS patients, making those treatments available on the NHS might not only help a percentage of ME/CFS patients, but might also have an influential effect on the minds of GPS. By the nature of these drug treatments, it makes the GP view ME/CFS as a biological illness, not a psychological one.



I agree that the evidence base (in terms of published studies) for these ME/CFS treatments pioneered by doctors in the US is poor, and since the NHS runs on evidence-based principles, it would be hard to get these treatments adopted, unless the government or funding bodies decided to spend some money on large-scale clinical trials.

But I feel that there is strong need to provide UK GPs with at least one or two pharmaceutical treatments they can deploy as biological treatments for ME/CFS, if we are aiming to make GPs appreciate that ME/CFS is a biological disease that can in some cases be ameliorated by biomedical treatments.

 

@Hip. We re not aiming to make GPs think ME is a biological disease. We are aiming to find out if treatments actually work. Surely most people with ME would be overjoyed to discover they had a psychiatric disease after all if someone found a way to get rid of it? The most powerful weapon in the BPS artillery is the argument that patients are attacking CBT just because they don't like people to think they have a psychiatric condition.

And there are a whole load of reasons why your suggestion would not work even if one considers it acceptable to con both doctors and patients into false beliefs.

 

But if patients were to push for the use of pharmacological interventions with a poor evidence base that would undermine criticisms of the way the CBT/GET have been promoted by doctors despite their poor evidence base.

I think that if we ask for treatments which lack good evidence of efficacy then we will be stuck with CBT/GET.

Having pharmacological interventions with good evidence of efficacy would certainly be very helpful politically, as well as in their ability to help patients, but we've not got them yet.

 

Unless your name is Donald Trump!

 

Yes!

These people have never bothered to listen and understand our point of view. They continue to mischaracterise our augments as it is (politically) easier to fight a strawman than actually listen and engage.

None of us are saying that the mind cannot affect the body or vice versa, we don't care about this mind-body dualism nonsense that they keep saying we believe. We are saying that psychological aspects are non-specific and secondary and we know this because psychological treatments (CBT, GET and antidepressants) are not effective. We are saying the they are using poor standards of evidence that would not be valid for the approval of say a drug (requires blinding or meaningful objective outcomes). Whenever we point this out, it's either met with silence, or a comment more or less along the lines of: but your illness is purely subjective and therefore there is no such objective outcome. Or they say (for the benefit of outside readers and not patients) that subjective outcome measures are the most useful and meaningful for patients, despite the fact that patients are repeatedly telling them this is not true. (despite the fact that patient groups have repeatedly make such suggestions for decades: actigraphy, employment/study outcomes etc).

I think it is clear that they don't care about patient views, this is a bigger war about the legitimacy of psychiatry in the public health space. That is why they never actually listen to us and address our concerns directly, that is why they have NEVER BOTHERED TO DEVELOP TRUST WITH THE PATIENT COMMUNITY.

Contrast with people like Lenny Jason who have also done GET and CBT trials - he is well respected!!! The difference is he has tried to build trust with the community and has never lied or spun the results of his studies, much unlike Michael Sharpe.

 

MS's standard reposte of "Have you actually read the paper" is going to backfire on him bigtime soon I think. Although lots of people to date, with the scientific understanding needed, have already done this and critiqued it admirably, they are so far mostly people on the inside of the ME cause, which the BPS brigade disregard and despise so much. But I think the time is coming where good scientists from other areas are starting to take an interest simply because they are good scientists, and cannnot abide what PACE etc are doing to the good name of science generally. I'm looking forward to seeing a twitter exchange along the lines of "Have you read the paper?", "Yes, myself and x other scientist colleagues have, and we all agree your paper is cr*p".