Discussion in 'General ME/CFS News' started by Amw66, Mar 16, 2018.
This is a great comment, thank you, it explains exactly how I feel about JB's commentary.
I enjoy your passion, so please feel free to get carried away.
deleted - doesn't matter
I think we all need to give ourselves a break and stop torturing each other over the correct way to speak/behave/advocate. Biased psychiatrists will think we're nutters whatever we do. Let's save our energy for critiquing and fighting them, instead of each other.
As you say, Adam, they think we're all crazy. And is exactly why I feel we have to consider how we interact with these dreadful PACE doctors. They think so little of us already and being 'bulleted' by tweets like JB's doesn't IMO help, although, she is, of course, motivated from a good place. But we have learned that trying to inform them gets us nowhere, Sharpe has more than enough feedback that GET/CBT is harmful rubbish but still he digs in. I've tweeted him occasionally re. PACE, have only been met by silence.
And I fear this kind of 'over-tweeting' can only add to that.
Jeez, I am all for being feisty and speaking truth to power, I am one of many pwME blocked by Wessely, after all, but to barrage anyone with unsolicited tweets is never good. It can feel like being grabbed by the collar if someone tweets you out of blue with one critical tweet, though I have to say it hasn't happened to me very often, happily, but to be on the receiving end of a whole complex thread is not best way to fight these people at this point.
Sharpe could quite easily use that against us, he will be thinking no doubt, 'Oh, JB, high profile filmmaker sent me her MRI along with a string of tweets about MRIs and off-label medicines in USA and generally bashed the NHS/UK as a terrible place to have ME. Thanks but no thanks'.
Not that I give one hoot about Michael Sharpe, don't misunderstand! I just think it's all about tone and context. Jenn has put herself at centre of ME advocacy, globally, and I think some self-reflection would not go amiss in this instance. Jenn will not truly be affected by NICE, she has the best of care possible in the current ME climate, which is great, but I am not really sure it is her role to be tweeting Michael Sharpe like this and offering direction to NICE. We actually have ME patients/orgs here doing a bloody great job already, people who've been lobbying NICE for many years. Does she give them no regard?
These are our lives, the NICE guideline being re-written is huge, we don't want that jeopardised in any way.
I think this is miss information too.
I don’t know how things got so confusing so bear with me.
I ahve low Nk cells ( and so do a lot of the Cfs plp). If you google natural killer cell dysfunction syndrome. This is a recognized medical entity with a ICd code.
If you have this, the acepted treatment is antivirals if your titters are too high. independent from Cfs that is the stablished treatment and why I am on it.
My icd code was Nk feel dysfunction.
So is my thyroid issue.... so when they advocate for appropriate treatment for Cfs ( based on your particular presentation) this is not unproven treatment, is symptom treatment which is totally appropriate based on the patient case. And so is sleep disorders, if you have any particular gut over growth...
so antivirals, LDN, antibiotics is ok to use if the standard test support it. Is not a blank crazy unsupported statement at all!
@Londinium you have articulated my point of view beautifully thank you I long for the ability to be so succinct.
Yes I agree, however....
What @Nasim Marie Jafry says is spot on imho.
I'm very happy to cut everyone slack, i need lots of it myself. So wouldnt have dreamed of commenting if she hadn't tagged Sharpe & Hammond. People are free to say whatever they like on twitter or anywhere else, & despite the occasional cringe I tend not to react, we're all just doing our best. But when you start tagging Sharpe, Wessely or anyone else in power you need to be extremely shrewd & it needs pointing out where people are likely doing more harm than good.
It's good to try to take the time to criticise one another's ideas and work (I know I'd be talking utter nonsense if it wasn't for other people's willingness to point out when I'v got things wrong), but it's good to try to challenge one another in a kindly way, and also stay open to the possibility that it could be that the person we're disagreeing with is actually right after all. It's all such a complicated topic, with so much uncertainty, that I'm sure all of us have misguided views about parts of it. Twitter doesn't seem like the ideal format for really discussing some of these things!
This is so true, Seven, and it's a direct outcome of the fake narrative of the psych school. Once you have a ME/CFS Dx, most docs stop looking. As if a patient couldn't have concurrent medical issues (even if they also had a legit psych issue.This is criminal negligence!) It is the height of irresponsibility, and I agree with you that many of us DO have conditions like those that you mention that can be helped by the treatments Jen tweeted.
It is a key part of the politicization of this disease that causes so much harm to patients: once this Dx is reached, most doctors simply stop looking. It is a terrible shame and Jen is correct to point it out. Personally I wouldn't tag Sharpe and the like but instead people that are likely to actually give a crap and work to change this. The old guard are not going to voluntarily go away, but will instead naturally be made obsolete by the growing army of fine researchers, journalists, and doctors that are finally seeing reality.
Thanks, @Seven for sharing your experience.
I agree with you that if we have other diagnosed conditions as you describe then we should get the appropriate treatments for them.
But antivirals, LDN, antibiotics, while recognised treatments for some of the conditions some people have in addition to their ME, and should be used for these, they are not treatments that have been clinically trialled for ME itself, so NICE cannot recommend them for ME.
I think the point that some of us have been trying to make is that it's great to point out the value of these treatments for some ME people who have these other recognised conditions, and to share our experiences with each other so we can learn, and if it seems appropriate, try to get testing and treatment for these conditions.
But it is not such a good idea to address people with influence with the suggestion that these should be included in ME treatments. It makes it look like we are demanding unproven treatments, which means they can come back at us and say ME advocates are unscientific and should not be listened to.
I think Jen Brea does a great job of advocacy generally, I follow her on twitter and really appreciate all she does.
I just think we all need to tread extremely carefully when addressing comments to people who have the power to influence our futures - Michael Sharpe could use this as an example of unscientific advocacy. Though to be honest I suspect he'll just ignore it and go on his merry way promoting the whole MUS disaster.
You can think what I wrote was stupid – fine – but I just want to be clear about what I was/was not saying. My intent is exactly what Seven describes. I was never making the argument that these treatments should be included in any guidelines – NICE, CDC or otherwise. There simply isn't the evidence for it and for some of these treatments, there may never be. This community is too heterogeneous (yes, even with the strictest of criteria).
Rather, all of these treatments have approved/standard medical uses for conditions that people with ME frequently have. Diamox is part of the standard of care for intracranial pressure, which is possible to diagnose with the right testing for those who have symptoms. Florinef, Mestinon, Beta Blockers are all commonly prescribed for POTS. Antivirals are controversial for "high titers," but completely uncontroversial for recurrent herpes infections that doctors can see with a naked eye, like recurrent HSV1 infections (which led to my antiviral prescription) or shingles.
IVIG is another example. There is no evidence that this should be a standard treatment for ME. But it is a standard treatment for people who have low IGG. The majority of people with ME won't fall into that category, but I know some who were lucky enough to get the testing early in their illness that showed low IGG, received IVIG, and recovered.
And then there is the exceedingly rare case of Valcyte prescribed for HHV-6 measured by PCR in the case of two children who had chromosomally integrated HHV-6.
Whether some of these specific diagnoses are part and parcel of ME, potential individual complications of a common underlying disease process, or were misdiagnoses we really don't know enough yet about the population or disease mechanisms to say.
CBT/GET applied as a blanket treatment is dangerous, but so (potentially) are these other treatments. The good news is, they have all been approved for human use for decades and are part of the standard of care for conditions that can be diagnosed. What's dangerous about the NICE guidelines (which I was never attempting to comment on in my original thread) is that they specifically advise AGAINST these treatments and AGAINST doing further testing for conditions for which those treatments *are* indicated.
The result is that many people are not getting diagnosed for potentially treatable issues, whether they be structural brain/spine issues (chiari malformation, spinal fluid leaks, spinal stenosis, pseudotumor cerebri), Ehler's Danlos Syndromes, POTS, or demonstrable recurrent infections. A lot is being missed, and the cases I've encountered where people have substantial improvement or recovery are those where folks were lucky enough to find out what was specifically underlying their symptoms and for which there was an already existing treatment. Even with infinite care, not everyone will have a cause that can be parsed, but some of us will, and we all deserve access to that diagnosis and treatment.
I've learned a lot over the last few days about what it means to have 13K followers and about what a shit medium Twitter is for discussing complex subjects. I am now the recipient/nexus of so much information, and want to share that information with people whose lives it could save, but at the same time I carry a responsibility by virtue of being implicitly trusted by so many (I am not a private citizen anymore). I will be more circumspect in the future. The good news is, there's basically nil chance anything I said will change the course of history.
Hello and welcome @JenB
It’s good to have you here on the forum. I can’t really take all this thread in as I have horrible difficulties with cognition, but thank you for taking the time to take part.
It's too easy for patients to believe in treatments based on hearsay. I have a flattened pituitary as well and as far as I know this isn't uncommon and doesn't necessarily produce any symptoms. Yet someone could mistakenly think that this represents a meaningful structural brain abnormality. Let's not underestimate the difficulty of the problem we are trying to solve. There are not yet any easy answers. Doctors can probably do more for us patients than they think but probably also not as much as patients would like. I feel it's important to lay the foundations for solving the problem, which involves political recognition, adequate funding and good research.
We patients also need to demonstrate that we can do a better job than the CBT/GET crowd and similar.
Hi @JenB, really good to see you here. Welcome .
Thanks, JemPD - my point from the beginning.
Hi @JenB, welcome, you are so much valued by our community, and we are grateful for all your brilliant advocacy, I hope you'll stick around and join in our discussions when you have time.
I agree with you that Twitter is too limited a medium for in depth communication and can lead to misunderstandings. That's why I very rarely use it.
Twitter is a nightmare for these 'debates', always bound to end in tears, but it is also a brill social media in many ways if low on energy (for literary links etc). Moreover, Jennifer presented her argument to Hammond and Sharpe on Twitter and I believe she was not on here to debate until an hour ago, so Twitter is an obvious platform to challenge her on wisdom of tweeting Sharpe, in particular.
I have in truth been exhausted and in tears about this whole thing, I was trying to work out why I was so vexed and frustrated. I think being ill for so, so long does seep into your very being and the sense of injustice at what these PACE medics have done is overwhelming. It's just too much sometimes to bear.
I don't come here v often but I was keen to express my concerns when I saw this thread and I am glad I brought it up on Twitter too, because it has resulted with Jennifer stopping off here and pausing and thinking a little, which is all I asked. Although I am still none the wiser about the impulse to tweet Sharpe.
This is true. Learning self-care was something that took me a long time. It's very easy, when you're trapped at home all day, to get lost in debates online which sap vital energy. I know exactly how you feel. <3
I have a gorgeous specialty tea shop right across road, so I went out and got some luxury green tea, it was good to be in sun, it was sunny but so bitingly cold. It made me feel better.
Hello @JenB and welcome
That's a lot of followers. I criticised you earlier in this thread for what I believe to be an error of judgement, but I know that I couldn't handle twitter myself. This forum is a good place for discussion, or you might find starting a blog that you tweet links to would be a better option for complex subjects. Just a suggestion.
Thanks for posting.
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