CBT- Jen Brea Twitter

Do we know who of our more high profile advocates Jen might be more inclined to listen to, and not just be offended by their 'interfering'? I know @dave30th David Tuller is much more clued into the UK scene these days, and from the perspective of a US citizen. But also he is extremely busy at the moment.

 

Agree with you, Dr Carrot, I was peeved at the slights being made on NHS. It is not NHS per se that has caused the appalling lack of care for pwME but rather a particular influential narrative. I am hugely grateful for NHS in spite of its dreadful track record on ME. As you say, pwME are treated poorly *everywhere*. This pitting UK against USA is not helpful, in my opinion, it only risks antagonising others.

 

I feel that it’s more about being accepting of each other’s viewpoint, culture, education, experience, and communication style. We can read the same words, on Twitter, and come away with different perceptions as to their intent and meaning.

 

I'm fine with the NHS being slagged off a bit. There are lots of ways that it's better than the US system, but it has been pretty terrible with CFS, and a lot of people in the UK can have an unduly positive view of it imo.

 

Do you mind sharing what you like most about the NHS?

 

A medical system providing healthcare on the basis of need, funded out of general taxation.

It does seem that doing that requires systems to limit patient's ability to make decisions about what their own needs truly are though. It should be able to require these systems to be more open to challenge, but it could be that this is harder in a society which is often pretty deferential, like the UK's.

 

Is there an appeals process one can persue, if a service or treatment is denied?

 

Yes, but it can be quite complicated. Also, for CFS there's more of a problem with a centralised authority deciding it would be best for CFS patients to be given optimistic information about the benefits of CBS/GET, and this approach then being spread throughout the whole system, with few mechanisms available for patient groups/advocates to challenge what is being done.

I get the impression that the way the NHS works can also encourages a culture in which patients feel grateful for what they get, rather than be demanding for improvements, or complaining about problems (this may have changed over the last 10-15 years - typing this stuff out makes me realise how much my views are based on possibly out of date impressions I got from just speaking to other people around me).

 

Do you know if CBT/GET is prescribed for other Dx, besides CFS?

In the US, from my perspective, no matter what the Dx, it’s all about finding competent doctors; and then looking for insurance plans that reimburse those doctors. It’s a very complex and time consuming process to calculate the best approach. Because I have to pay for my own insurance, and can view the monthly cost, I feel more entitled to challenge insurance denials.

 

I think that biopsychosocial style approaches are being increasingly promoted for a wide range of conditions that can be put in the 'MUS' category.

There's less of a culture of hunting around for different doctors here, and doing so can be frowned upon, particularly with a diagnosis like CFS.

But yes, a lot of the effort that's a part of the US system is avoided. I remember reading some study comparing the US and UK systems which suggested that the advantages/disadvantages balanced themselves out, aside from the fact that the US system was so much more work and stress for sick people, which seemed to lead to overall worse outcomes in a range of areas. (I read this study back when I was far more trusting of academia, so have no idea if it was nonsense or not).

 

Yes, of course, we will always interpret tweets according to our own 'landscapes'. And we will speak from our own landscapes.

The USA is certainly leading in its rejection of PACE but I don't think it's realistic to paint the USA as a better place for pwME because you can order MRIs at drop of a hat and get off label medicines - which is what Jen and another USA patient appeared to be doing initially. I noticed she did reign herself in after criticism though - a different USA patient had to point out that not everyone is so well insured/uninsured - and Jen agreed treatment of pwME was 'shit' (her words) everywhere, but the beginning of the thread was most definitely USA is better place to have ME, which I disagree with.

Still, JB is in a v privileged position re her health insurance, she seems to be able to have every test she wishes and has just had an old MR re-evaluated and apparently has an abnormality which was missed six years ago (in spite of such a great health care system). And this was her ammunition for doctors Sharpe and Hammond - in the USA we have MRIs and we have this and we have that etc, etc. I found the tone to be a little chauvinistic. She is clearly passionate but I think she really needs to think a little before going off on these unsolicited *long* tweeting threads to others - Dr Hammond appears to be a good guy (I think) - otherwise it can be a little alienating. More harm than good is a possible outcome. (And the inclusion of Sharpe is still beyond me, she has not responded to tweets about that.)

Again, I recognise I am unusual in having had a decent ME diagnosis here and have seen treatment go from little to bad to worse. But I still value NHS hugely. I am not honestly sure what good it would do to ask my GP - 35 years into ME - for an MRI.

Jen has publicly said several times in a different context she would not survive in UK as a pwME as she would not have access to her meds, and consequently she would probably take her own life. I only say this as she clearly finds the UK an untenable place to cope with having ME. So I can see that it would be very frightening to not have access to these meds which she says give her a 'good quality of life'. Still, it's all about tone.

There are of course good and bad aspects to USA and UK healthcare, I have experience of USA healthcare, I just think we need to be careful in pitting one against the other. We have enough on our hands, collectively, as ME patients.

 

Hey, It was not about the NHS being slagged off a bit, we are all acutely aware of the flaws in NHS - and I think it is currently harsher for NHS England than NHS Scotland - it was more about the claim/implication that USA is better place to have ME than UK, which I don't necessarily agree with. But it was mostly about the tone, which I found kind of chauvinistic and I have explained much more in my comment to Mermaid.

 

And if you are perceived as doing lots of "hunting around for different doctors" this is referred to as doctor shopping in the UK, and has been used as an example of criminal behaviour (by the prosecution) in at least one court case :

http://www.bbc.co.uk/news/uk-england-hereford-worcester-29620239

http://www.worcesternews.co.uk/news/11566451.Mary_Kidson_cleared_of_trying_to_poison_daughter/

The woman involved had sought help for her daughter in the UK from the NHS, had got nowhere, and had eventually taken her to see Dr Thierry Hertoghe in Belgium. He was portrayed as being a dodgy quack in the UK. (He was foreign after all. It was UK xenophobia at its finest.)

The woman was acquitted after the judge stopped the trial before the defence even got started, but not before she had spent six months in prison. Her daughter also spent 2 years in a psychiatric hospital (I think).

 

If you have US$2000.00 and a doctor that agrees to Rx it....

 

Goodness does she really think that? Crumbs no! He will just take whatever she says & twist it for his own purposes.

yes a total fantasy. I sometimes wonder if she's aware of the way some of the things she does can be twisted to appear to bolster the BPS ideas.... like pitching a tent in the back garden & making Omar change his clothes repeatedly before entering, & swallowing worms. Dont get me wrong i am aware of anti mould protocols, helminthic therapy and am not poo-pooing either, and i think unrest is great, but yikes i cringe sometimes because i can just see the BPSers having a good laugh at that & pointing to it & saying "see? they are nutters!".

Indeed.

I am so afraid of this. I honestly think there is a very real risk that CBT/GET will be endorsed stronger than ever.

In addition i think JB making the point that CBT is not ok for this population because it includes people with chiari etc misses the point. Lots of people with all kinds of well proven organic conditions would love to get some psych support to cope, the point is that CBT for ME/CFS is intended to cure people of their beliefs that they are ill & get them to overcome their 'inappropriate' fear of exertion. So even if the ME/CFS population didnt include anyone with missed dx of other things, it would still be abusive simply because it's designed to gaslight rather than support. It's almost like saying that it's ok for the people without those missed diagnoses.
I'm not sure she's fully grasped how sinister the PACE form of CBT really is. (hence her saying she used to think that only the GET was dangerous). Messing with people's heads, with their reality, is very dangerous indeed, as any severe gaslighting/cult survivor will tell you.

- The problem with giving CBT for ME is not merely that a psych approach is all that is offered. It's the type of psych approach too. I mean TBH if they cant offer any decent evidence based treatment they should just admit that & then give people the best support they can in the meantime while research is done. Including offering some supportive counselling for those that want it - but only when those counsellors recognise the condition as organic but poorly understood & take the same approach they would to someone coming in depressed because they have MS or whatever.
One of the main problems we have imo isnt that 'CBT' is being given, it's that CBT for ME/CFS is being given. I mean offering merely CBT to us without any other attempts/research so that proper treatments could be offered would be awful, but if it were regular CBT as used for MS/Cancer etc, at least it wouldnt be doing harm. And this is the smoke & mirrors that the BPSers try to hide behind. But we know better, we know that CBT for ME/CFs is a whole different animal & it's that knowledge that needs sharing. It's irrelevant & even obfuscation to say it's wrong to give CBT because the population includes people with missed dx.

I think she's missing the point & while i'm grateful for all her motivations & efforts, if she keeps doing as she's done in that particular thread i'm afraid it will certainly do more harm than good.

I'm sure you wont read this Jen Brea but if you do i honour & respect you & am hugely grateful for Unrest, but we're in a dangerous position in the UK, pls find out more before continuing in this vein.

 

Well at the end of the day it's just a moment on twitter, I suppose, and none of us are perfect. Twitter isn't where the decision making process happens.

 

The people at the sharp end (I'm not speaking particularly re ME now) are fantastically dedicated, compassionate and hard working. But that's my experience, and I'm not the one with ME.

Edit: Sorry @MErmaid, realise I got carried away and barged in on your question to @Esther12.

 

This is the crux of the issue. Yes, we're desperate for clinical trials because we want a cure as soon as possible - but in reality, we still don't understand the basic pathology of ME/CFS and are in no place to start demanding certain treatments on the NHS. So when patients start going on about pet theories (LDN, enteroviruses, anti-virals, mold (sic), vaccines) that have just as poor an evidential basis as GET or LP it can be highly damaging. Similarly if patients ally themselves with practitioners/organisation that are linked with alternative medicine or similar.

I hope it doesn't sound too defeatist, but in reality I think we know very little with any real certainty about ME/CFS, other than GET and LP don't work for it. There's reasonable evidence that there is some form of immune/metabolic dysfunction but it is inconsistent between studies and we don't know if it is causative or caused by the underlying pathology. We don't know if ME/CFS is one condition, two conditions or ten. We don't even really know long-term prognosis (sure, we have a strong suspicion but there's no long-term study to back that up AFAIK). IMHO, advocacy needs to focus on three things now: 1) removing ineffective and potentially harmful treatments; 2) ensuring dignity of care and recognition that this is a real, debilitating condition that means the patient needs proper state support; and 3) funding for basic science. Only once the last of these is achieved can advocacy move on to clinical trials, and after that for treatments shown to be effective to be made available. Doing it out of that order by demanding treatments that have no good data to back them up is likely to be highly counter-productive.

 

ETA: however, we should also cut each other some slack. Most of us are trying to achieve the same thing even if we have different ways of going about it. I do think the politics of ME/CFS can be overly fraught at times and people are too quick to criticise others. (Unless, of course, you're advocating homeopathy or not vaccinating your kids in which case fetch my pitchfork )

 

Of course, yes, but this 'moment' in Twitter, aside from the lack of wisdom in trying to include Sharpe in her anecdotal treatments, for want of a better word, she tagged both Sharpe and Hammond into a thread they had not chosen to be in and then tweeted at length, so they will have had had notifications for every tweet - that would be annoying for anyone, hardly likely to engage either of them. I had to point out to her that she was also tagging them in every conversation that had resulted from her initially including them.

I also just think it is ill judged that she thinks Sharpe will listen to an American patient when he has failed to listen to all British patients. Her filmmaking skills aside - and I v much admired Unrest as an art work as my review shows, but Jenn is just one more pwME, her experience is hardly central to the future of ME policy in UK. If that makes sense.