Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

[Trish]

But the problem is that they're not accepted diagnoses, and using them in consultations may mean the patient is less likely to be believed. That's what I meant about people unwittingly harming themselves.

I think this may illustrate a difference between the UK and USA.

 

[Kitty]

I think this may illustrate a difference between the UK and USA.

Yes. And that's what I mean about harms having international reach.

 

[rvallee]

Not that the BPS people are treating us this way, but it might be a key reason for why non-BPS people don’t want to touch us. They might be happy thinking ME/CFS is real, but can’t be bothered with all of the other stuff.

Of course that’s their fault for abandoning their duties, but from a strategic standpoint it might still be warranted to ask ourselves and others to stop making the climb even steeper.

I'm not convinced by this at all, as in 0%. This sounds very similar to "stop making him angry" domestic violence apology to me. For decades we were completely ignored, discriminated and lied to and about by the medical profession without any of this happening. Everything would be 100% identical to how things are right now if none of this had ever happened.

From a professional perspective, the idea of physicians refusing to take those illnesses seriously because they are annoyed at the framings the patients try to come up is the complete breakdown of the systems they work in. It's a meme at best, and a terrible one at that. It's also explicitly criminal, there are laws against this, they're just not enforced here. It makes a complete mockery of the concept of professionalism and of the obligations that health care technically operates under, including the rules on paper that no one actually enforces.

There is genuinely some truth that some of what we are seeing is similar to the response to "Me too", the feminist movement that tried to force social change about the high prevalence of sexual abuse and discrimination, and the explosion of misogyny that led to things like Xitter encouraging the creation of explicitly illegal sexual abuse content, which is explicitly a "you keep making me angry and that's why I keep hitting you, because you deserve it, you do this to yourself". But the responsibility for this is 100% on the medical profession and its institutions, through and through.

The idea that we are responsible for this abuse is absurd and I reject it with spiteful vehemence and contempt.

 

[rvallee]

Well why don't they just do exactly that? Deal with ME/CFS and not the other stuff? Plenty of people with other serious chronic illnesses have woo beliefs. They aren't denied basic care and treatment and research.

Exactly. They don't. The idea that there is anything we could do, or not do, to make a complete 180 shift is ridiculous.

 

[hotblack]

I don’t know. But I do think plenty of people get worse care if they give the doctors a lot of hassle.

My problem with this is I went out of my way (and still do) to not be ‘one of those’ patients. I have spent a decade giving medics every opportunity to give me the basics. And yet…

I can see the argument that people who are better than me but shout a lot of woo make it worse for all of us. I can see the argument that people who spout woo may make it worse for themselves.

But the problem is, the idea that giving doctors no hassle gets us better care, is simply not the case. And doctors have to take responsibility for that.

That is not my experience

But it is mine. And that of others. I have never claimed any woo and yet have been told there is nothing wrong with me, denied very basic support, referred for psychological support, etc.

I think there’s an element here of two things being true at once. The woo from patients and advocates is not helpful. The woo from the medical establishment is not helpful. But in working to stop the former I think any hint of patient blame for the latter or any idea that it is the patients responsible for the failing of the medical service is unhelpful too.

That may be hard for some to hear but they need to.

People with ME/CFS have been blamed for our own illness for years, blaming for not getting better, so blaming us for the failings of others now is unhelpful.

As @V.R.T. said “Plenty of people with other serious chronic illnesses have woo beliefs. They aren't denied basic care and treatment and research.”

I have family and friends who have had serious diseases and gone down all sorts of weird treatments but they have never been denied NHS care. They’ve sometimes shunned it, but usually it’s been accepting the NHS stuff and the alternative stuff. There’s a huge amount of that in the UK.

People who abuse their bodies from food, drink, drugs to extreme sports, none are denied care like we are. That is on the medical establishment not us.

There’s possibly a matter of perspective here too. Jonathan comes into contact with more representatives and advocates pushing these ideas. Most of us have more history of problems from medical institutions we once trusted.

We need to stop the woo from all. Let’s focus on that.

 

[rvallee]

I share the outrage that doctors are failing to care for me and other PwME because they don't like the theories that some other patients hold about their ilness - especially when those patients have been told those theories by other doctors.

But if the beliefs of a substantial fraction of the patient community are a big part of the problem, how do we tackle that? Our Fact Sheet 3 was deliberately aimed at health professionals. Is there something we could produce aimed at PwME about this?

What you're saying on this thread (and similar things that you've said on other threads) will be a real eye-opener for most PwME - it's a medical insider's view that we can't normally see. How can we get this across?

This is explicitly, on the book, abusive behavior and abusive behavior is never fixed by the victims behaving differently or by asking the abusers nicely.

It is fixed by punishing abusers, with consequences, and not tolerating it from rising up again from the top down. We can't get across to abusers that what they are doing is wrong, life doesn't work like that. It's an impossible task but there is no other way around it. We literally had decades of failure proving it doesn't matter, the abuse is systemic and will continue as long as it's not abolished.

How we get to abolish it is impossible to determine. This is 100% politics and abuse of power and these things are always almost impossible to fix because they are emotional and ideological, situations where bad things are turned into virtue.

 

[rvallee]

But the problem is that they're not accepted diagnoses, and using them in consultations may mean the patient is less likely to be believed. That's what I meant about people unwittingly harming themselves.

ME/CFS is also not an accepted diagnosis, so it changes nothing. I have no idea what this discussion is even about, frankly. It's a distortion of everything that's happening.

 

[EndME]

One other point I'd make is that, of the private physicians in the UK who have made a practice out of seeing pwME - the ones that severe & very severe patients tend to turn to when their needs are not being met or they're having difficulties with the NHS, including e.g. requiring social care or feeding support - I think all of them, now, are hEDS-POTS-MCAS "believers" and, from what I've heard, many seem to have a very low threshold for making such diagnoses. The NHS leaves a subset of patients with nowhere to turn but to those who will give them these labels.

And even a few current academic physicians think the concept is credible, to the point where the recent NHS e-learning module for severe ME/CFS (which I understand was written principally by Dr Strain) contains statements such as these:

When this kind of thing is in official NHS training material it is difficult to know where to begin to tackle it.

Yes, there is no disparity in fringeness between clinicans that give an ME/CFS diagnosis and those that give a POTS, hEDS or MCAS diagnosis. It is typically either handed out by those type of clinicans that also have podcasts, believe in spontaneous human combustion being a consequence or by those that have a center focused on complex illnesses, which for anybody looking will be far more reputable than an obscure forum like S4ME given for example various cooperations, for example with the President of the American Association of Immunologists.

You will typically not find a university hospital in Europe where someone presenting with symptoms consistent of ME/CFS will be given an ME/CFS diagnosis. Not at the Charite in Berlin and not at the Amsterdam UMC, where involved clinicians are now running centers for ME/CFS. It is typically a diagnosis one has to seek out. The mainstream opinion remains that of the most reputable person to have worked on ME/CFS: Simon Wessely. And on that basis you maybe you might be more likely to get a CFS or CF diagnosis.

Getting serious clinicans involved in ME/CFS will be an uphill battle. They are either not serious or all they see is that all others involved are not serious. It would be a lovely to get just one or 2 involved without great fanfare or announcements that an “ally” has been found. Just serious business. I appreciate anybody that is ready for that uphill battle.

 

[rvallee]

But whatever the rationale and unknown biology behind those health experiences, I've been in enough patient groups over enough years to recognise a familiar experience being described by patients that, for all the problems with labelling it, is currently being labelled MCAS. I also see how that label has been useful for patients to identify others with similar experience, share tips for dealing with it & in quite a no. of cases genuinely make their QOL better by intervening using tips from others.

Ultimately this is the main reason why it's happening. It's not because it's more convincing to doctors, it clearly isn't, it's about making it possible for people who share the same problems to group and communicate. It's not possible to solve a problem without identifying it, without naming it, and it just happened that the medical profession being completely derelict in its obligations has caused this mess.

It's not really disputable that it has no other advantages, the groups don't really offer much help beyond knowing that there are other people with the same thing, but they definitely serve that purpose and it's only happening because the medical profession abandons us. It's the dereliction of duty that sets everything on the wrong path and it's the only root cause that can solve this. Just because it's out of our control doesn't change that, there is nothing we can do that will satisfy them.

The exact same thing happened with LC. It's frankly absurd that this discussion is happening here considering that. We literally just went through a focusing event that clarified everything and the responsibility for this failure is also 100% in the medical profession.

 

[rvallee]

I do see the need for strongly warning patients how the medical profession holds stigmatising views of those labels & that it's much better when in a medical encounter to use generic descriptions rather than these labels if they want to be taken seriously. I also think advice (if that's the right word) is needed that patients would hold those labels lightly, as placeholders for describing health experiences that hopefully in the future will be better explained and better labelled. But I really think the issue is more about teaching patients to protect themselves from a limited and unscrupulous medical system, and about limiting their use of labels with most medical professionals, than it is about taking away their own descriptions of real illness experiences.

This I fully agree with. We do have to warn people, but this is an explicitly abusive situation where systemic abuse is the main threat to our survival and well-being, and it is the actual framing that should be adopted. It should be treated the same as advice on how to deal with violent abuse, because it's what it is.

What matters is that it should not refrain from saying so, it should 100% be framed as "this is abuse, you will be abused, here is how you can minimize the abuse you will be subjected to, but none of it is your fault and there is nothing you can do to avoid this abuse, you can only avoid the worst of it because the abuse is systemic and intentional".

 

[EndME]

It's frankly absurd that this discussion is happening here considering that.

I think it is being argued that there might now be a small way forward even just getting a few serious clinicans involved on the basis of things like DecodeME, but that for that to happen the other mist has to clear.

 

[Utsikt]

I was glad to find the Fact Sheets here, and glad that @Jonathan Edwards shared his opinion of the best diagnostic criteria lists. The combination was instructional and corroborating.

Which advocacy groups are y'all talking about?

Most of the ME/CFS ones. You’ll find problematic statements from all of them.

I'm not convinced by this at all, as in 0%. This sounds very similar to "stop making him angry" domestic violence apology to me.

That is not what I’m trying to say. Just that if you’re in an abusive relationship that you can’t get out of, not making him angry might actually save your life.

It shouldn’t be like that. But we can’t pretend like it isn’t. This is about survival, not how we want the world to be.

For decades we were completely ignored, discriminated and lied to and about by the medical profession without any of this happening. Everything would be 100% identical to how things are right now if none of this had ever happened.

No it would not be identical, because we would at least have some non-BPS doctors that could get us normal healthcare.

The idea that we are responsible for this abuse is absurd and I reject it with spiteful vehemence and contempt.

I am not saying we are responsible or accountable for the abuse by our abusers. That is never the case. But actions have consequences in the world we live in, even if those consequences are completely unjust and unwarranted.

Learning how to avoid some of the negative consequences is a valid strategy, especially when the avoidance doesn’t come at the cost of others.

But the problem is, the idea that giving doctors no hassle gets us better care, is simply not the case. And doctors have to take responsibility for that.

I’m talking about on average here. And I completely agree that the doctors should take responsibility for this situation. But we can’t ignore the strategic options that are available to us, even if those options are completely unfair.

 

[Trish]

ME/CFS is also not an accepted diagnosis, so it changes nothing. I have no idea what this discussion is even about, frankly. It's a distortion of everything that's happening.

I am confused by your reaction, @rvallee. Can you help me to understand?

You seem to be saying this thread is about blaming the victim, ie patients. That's far from what I'm talking about.

I agree we have, in ME/CFS, a disputed diagnosis that a lot of physicians don't believe has any biological basis. But at least in the UK it is officially recognised by the NHS and has a NICE guideline that's probably better than nothing, though I am increasingly doubtful about that.

As I understand it, in the UK, MCAS and hEDS are not recognised diagnostic categories, and that causes problems for patients if they are given the diagnosis.

If a person diagnosed with ME/CFS, already not well understood by doctors, is also given diagnoses of hEDS and MCAS, JE is telling us that this is leading to doctors concluding the pwME isn't really sick, and depriving them of care they need.

That's not the fault of the pwME and nobody here is saying it is. Nobody is blaming patients or saying they should stop saying they have these extra diagnoses.

The aim of this discussion, as I see it, is to work out whether there is a need for some kind of action we can participate in, to

help us to understand more about these diagnoses, so we can understand better if a doctor wants to diagnose us with one of them,

and to see if we can contribute in any way to better understanding of the evidence for and against the diagnostic categories so clinicians and patients organisations provide more accurate information to others.

Is there anything wrong with these aims?

 

[hotblack]

I am confused by your reaction, @rvallee. Can you help me to understand?

You seem to be saying this thread is about blaming the victim, ie patients. That's far from what I'm talking about.

I don’t want to speak for anyone else but I understand the reaction and share it. Some of the earlier posts read to me like victim blaming.

Some here have said doctors are not treating patients because of patients attitudes.

 

[DHagen]

The idea that we are responsible for this abuse is absurd and I reject it with spiteful vehemence and contempt.

Thank you for writing this. Since @Jonathan Edwards first suggested that serious research wasn't being done on ME/CFS because patients - patients who have been abused and gas-lit and denied care by medical professionals, who have had their lives ruined, who are in agony, mind you - are accepting diagnoses from those few individuals who acknowledge them and appear eager to help them, but which "serious" researchers regard as absurd, I have been fuming and deeply upset. Owing to my timidity and my damaged brain's inability to articulate thoughts and feelings with any art or clarity, I have aborted every attempt to comment. I am grateful to you for stepping up.

I share your views.

Edited to add: I am aware that much of the difficulty and the raised hackles arise as much from tone as from anything else, and that, certainly in most cases, the underlying intent is to address an impossible situation rationally.

 

[hotblack]

I don’t disagree with us needing to stop the woo and stop advocates from pushing it. It is unhelpful. Let’s work together to address that.

Painting a picture of patients being the reason we are all suffering and denied care is I think unhelpful in many ways including in the goal of combating the woo.

No amount of tiptoeing around the feelings and egos of medical professionals who should know better has changed anything or will change anything. If they were sure we were seriously ill people they would say so. They do not. That tells us everything.

It reminds me of the things said about petitions in that they don’t change minds they only give governments cover for doing something they believed in anyway. This is the same. Doctors aren’t changing their mind because of patients spouting woo, it just gives them cover for something they believed anyway. That these patients should be ignored.

 

[Trish]

Thank you for writing this. Since @Jonathan Edwards first suggested that serious research wasn't being done on ME/CFS because patients - patients who have been abused and gas-lit and denied care by medical professionals, who have had their lives ruined, who are in agony, mind you - are accepting diagnoses from those few individuals who acknowledge them and appear eager to help them, but which "serious" researchers regard as absurd, I have been fuming and deeply upset. Owing to my timidity and my damaged brain's inability to articulate thoughts and feelings with any art or clarity, I have aborted every attempt to comment. I am grateful to you for stepping up.

I share your views.

Thank you for speaking up. We do need to all understand the effect of our words.

I think we are all in different ways finding this a troubling situation and are struggling to find out whether anything can be done about how people with whatever diagosis are treated.

We do all want to work towards the same aim of better understanding and care for people who are without doubt suffering terribly. None of us want to add to that suffering.

Speaking for a moment as a moderator, I am finding this whole discussion difficult to cope with and exhausting, with feelings running high in all directions.

I think it's good to get those feelings out in the open. Let's continue to do so openly and kindly.

I'm truly sorry if anything I have said in this discussion has been experienced as patient blaming.

 

[DHagen]

Speaking for a moment as a moderator, I am finding this whole discussion difficult to cope with and exhausting, with feelings running high in all directions.

Thank you, @Trish, for all of your work here. I do not envy and am in awe of your ability to cope and to keep up with all of it. Obviously, the usually fraught business of engaging with others online ("Someone is WRONG on the internet!") can present additional challenges for pwME, not only because any emotional engagement or cognitive load can be damaging to us, but also because - as here - there are instances where the stakes of the discussion are very real and the underlying hurt very deep. Taking on the responsibility of moderating such discussions is an enormous burden, one whose weight I can scarce imagine.

Thank you so much for the work that you, and the other moderators, do.

 

[Utsikt]

I want to attempt to clarify my current thinking. This might change, and it might deviate from what I’ve said previously. I want to apologise for any harm or distress I’ve caused with my communication, if that has been the case. And thank you to those that educate me.

———

We have a right to equal access to healthcare, and that right is being violated. It is not our fault the right is being violated. It never will be our fault. We need to continue claiming and fighting for our rights.

My understanding of what @Jonathan Edwards has said, is that we are specifically talking about doctors that are otherwise neutral to ME/CFS, but don’t want to deal with all of the other diagnoses and therefore avoid ME/CFS altogether.

That is not the fault of the patients. It never is.

The actions of those doctors unfortunately makes it so that to some extent, we can give up one right in order to gain another. If someone are not willing to compromise one of their rights (freedom of speech and expression) to make it more likely that they receive healthcare, I will not blame them. That is their decision, based on their values and beliefs. Others might value a higher chance at getting more healthcare higher than they value their free speech. One is not better than the other, and we should not have to make a choice.

But I don’t think all patients are aware of this unfortunate, unethical and illegal behaviour by certain doctors. They deserve to know what’s going on and be allowed to make their own choices about what they think is best for them, given the current situation.

We also need to recognise that those that take it upon themselves to do advocacy for pwME/CFS need to be strategic about what they endorse and which messages they are putting out. They need to cut ties with the doctors that spreading the woo. Not only because we don’t need unscientific advocacy, but also because we need to try to protect ourself from an unjust world.

Advocacy is about trying to affect change for the better, and in order to do that effectively, we need to talk about the potential effects of any specific action - regardless of the legality of the mechanisms that causes those effects to be.

 

[StellariaGraminea]

I can see the argument that people who are better than me but shout a lot of woo make it worse for all of us.

Honestly, I don't see this argument at all, except as a concession to a profession that makes broad sweeping judgements about patient groups rather than seeing the person in front of them as an individual with their own health concerns, deserving of respect and care regardless of how they interpret their own health issues.

We need to stop the woo from all. Let’s focus on that.

We will never stop that imo unless every single last patient gets their own medical or health related degree. We can't expect to. Even if there's education on some aspect there will always be more "woo". Also, I feel we need to be careful about calling it "woo", it feels disrespectful to people's genuine attempts to understand what they're going through. On the other hand maybe it's a helpful term to disparage the nonsense that grifters might come up with. But for people who believe it, it comes across as minimising and dismissive and more likely to get their backs up.

I'm truly sorry if anything I have said in this discussion has been experienced as patient blaming.

Nothing you said came across as patient blaming to me at all @Trish Some other posts yes. I understand what you meant about an examination of the scientific claims behind these other labels... That seems like a lot of work. and maybe it's not really necessary. It might be more helpful warning people re how the medical system has been trained to disbelieve x, y, z, and how they are likely to dismiss you if you appear with these labels or appear to seeking a diagnosis of them. People need to learn how to play the system to their advantage and protect themselves from medical harm.

That's what was most helpful to me in the first year of this illness... learning from other patients the history of how the med system has treated patients and what the likely (negative / abusive) outcomes are if I continue to seek help from it with certain symptoms.