Invisible Illness A History, from Hysteria to Long Covid, 2026, Mendenhall (book)

But I agree that pulling things apart and trying to poke holes in things is the only way forward.
Agree and while I very much appreciate some the kind comments but that’s all I’m doing. From bed with an iPad and nothing more than a GCSE in biology. The science is sometimes an escape for me too tbh.

It’s tragic that those who should be supporting us aren’t but it is great so many patients are doing things, in whatever way they can, however they feel they can and in whatever field they can. It’s all useful be it research, advocacy, politics, media, etc. While I agree science will eventually be the big breakthrough, we need people working on all fronts, because whatever improvements we can get will help us until the next one comes along.
 
From bed with an iPad

I've been very impressed with your ability to take this stuff in – and @forestglip's of course – but that really is impressive.

After decades of working on desktops / laptops and making heavy use of keyboard commands (I date back to DOS), I still find iOS bafflingly clunky. I can just about work out how to use a website to generate sheet music on an iPad, but if I need to do anything on my phone beyond texting or photos, I almost always have to look it up. Despite having used iPhones since 2011. :rolleyes:
 
Partially because too many in the advocacy orgs seem to be too preoccupied with babble to communicate clearly on our behalf.

I also set up ME Local Network, which has 32 local support group members, and is part of the DHSC Delivery Plan task and finish group, and I (with members of our local group) regularly meet with our MP, and I write a lot of emails and consultation responses. Mostly on benefits, but also on the need for research funding.

It made me realise that we need more research with authority on our side to explain the reality of lived experience as well.

Edit to add missing words
 
I also set up ME Local Network, which has 32 local support group members, and is part of the DHSC Delivery Plan task and finish group, and I (with members of our local group) regularly meet with our MP, and I write a lot of emails and consultation responses. Mostly on benefits, but also on the need for research funding.

It made me realise that we need more research with authority on our side to explain the reality of lived experience as well.
I fully agree that we need more comprehensive descriptions of what it is like to live with ME/CFS.

Most of the social science attempts at describing the lived experiences trie to shoehorn whatever the patients say into their preferred model, or they don’t differentiate between observations and interpretations (so we end up with loads of unfounded statements about this or that being wrong biologically).

I think it’s a terribly difficult task, and it would probably take someone that’s completely disillusioned with their own field to be able to accomplish it.

We see the same thing right now with the rehab people on the biomed side that keep getting things wrong because they insist on looking at ME/CFS through a rehab lense. Or the biomed memes that never die. So it’s not unique to the social sciences.
 
It is still an abdication of moral duty and responsibility not to provide that funding and then blaming patients for the consequences of their failing.

This seems to be a circular argument, research is not done so healthcare is not available leading to a bait and switch to make patients responsible for their own harms and consequences of choices they did not make but were inflicted upon them.

None of this is ok and as citizens we should be demanding better. The question is how? Especially given the toll that ME takes.

A place we can start is rewriting these narratives that if we just practice the right wellness behaviors we can cure ourselves or reduce our expectations as to what a meaningful life could and should be. We need to push back on it and put responsibility back where it lies.
And as if pwme are allowed to have anything without being targeted to ensure we are kept above our threshold and can’t access tools lest ‘we become dependent on them’ and being trapped unable to do things so we rot and others being nasty supposedly not harm to make us worse but 'incentivise us' by it being so horrible to 'lazarus', hence why they still think they can claim ‘trying to help’ whilst having made the same person another 10% iller as per the 4,000 times before when they tried ‘being cruel’ and still won’t take responsibility and let the person free from the undermining.

It is the words and that self-deception that needs to be called out so they look in the mirror and realise they’ve just been a disability bigot and bully who harmed and there never was some healing anyone thought would come from it they just couldn’t admit being driven by that bigotry, certainly by this many years of outdatedness on. They currently get to tie their words in knots still pretend there is good inside them and the failure resulting from something imposed and coerced into the person is somehow that of the victim of said imposition.

I’m partly putting here as I’m not well enough to think up the full post to start a thread on it and hoping others will have observed similar and get the issue and suggestions

And partly because we need this deliberate darvo type training into culture via certain services to have simple terms pointed out for them. Maybe on the odd occasion these were invented for they are real but I suspect most of what they are used for isn’t. So it’s half documenting what’s actually happening and the natural impact/harm and half just calling out what others just see as obvious.



I think we should and can ask the ‘what do you think you are doing?’ And ‘you do realise what this actually does to the person in x, y, z situation’ without that always getting overshadowed by their excuses and needs rather than a realisation ‘it’s not working like they thought’. stop doing the action. Stop then double-harming the person because of need to rewrite history to justify the in truth unjustifiable now we know the result.


But I saw a reel where it was a teacher talking about an incident. One that didn’t end well for any of them so you’d think they’d be questioning the advice and protocols they’d been doing, but no. And I was gobsmacked at the extent of the invalidating passive aggressive potentially language and teens used to potentially remove/change how ‘what they were seeing’ was seen as.

It started of with saying the student was ‘dysregukated’ which to me I hate as a catch-all term so that they don’t have to say upset/angry or a specific and therefore don’t have to think ‘what happened to little Johnny’ and then ‘what would the old days common sense kind/normal thing to do be?’ .

It’s invalidating that there could be a proportionate cause and hearing that is the first step. Instead assume ‘gone mad for no reason’ so the victim gets blamed and nothing gets sorted other than teach the victim to stay silent and eat their emotions and behave. It could be autism where quiet rather than loads of people is needed for them to have a chance to not be overloaded. It’s likely both (as neurodivergent or ill people get bullied or treated unkindly too).

Because I’d imagine it’s hearing if they’ve just had someone being horrible to them. And refusing to hear that and instead calling the person crying ‘the problem’ is antagonism and injustice and invalidation and telling them they don’t matter ‘other than weasel words about sorting their behaviour with bs pretence feigning care for their emotional state but not what’s happened and dealing with that as one should’

There was then lots of talk about their tools and toolbox. And noting how the above to me is then not realising they are being weaponised by an ideology and not ‘being enabled to deal with’ I’ve increasingly been thinking lately that the term ‘tool’ for eg therapists and allied and professions such as teachers where these ideologies are really being used to embed a new culture is actually being used to sell these little ‘weapons’ and wind-up tricks as if they help the other person.

In this case she talked about ‘fresh faces’ or something where they obviously had a team of people in there with this one person (intimidating in itself?) and thought swapping it for a new team ‘might calm it’. I mean what actual trying to help real scientific psychology is this? It’s not. It’s surely some tailored riot control /mental hospital level advice assuming the worst of the person who might merely have had bad news or just been bullied themselves.

Anyway just hearing the whole thing upset me as I know this kind if language goes on - I heard a teacher friend talking with her other friend about their own child. And he’d just been treated really unfairly by both parents who were in a custody battle and disliked each other so they drove him off to his counselling appointment and said ‘he needs some time to calm first as he’s dysregulated’. Nice way of them not taking responsibility for ‘poor kid he’s upset as he’s just unfairly had a mouthful for no reason from both of us ‘ instead pretending he can’t regulate his emotions.

No one is supposed to be able to take being trapped in that on the chin. And using weasel terms to confuse what’s happen and hide ‘who started it’ knowing kids don’t have the experience or words to say it’s others playing games and being manipulative is naughty. But made worse by bystanders who used to be supposed to stop the problem (not the reaction) also being manipulative.

I had a nurse the other day try and make me do certain breathing simply because I’d said my blood pressure is higher when I’ve had to sit up a long time and exerted for an appointment due to my health condition. This imposition felt like a weapon/also in the face/power play she’d been taught to do as if it would de escalate rather than be being unnecessarily rude and coercive. She was taught to shut me up. I’m fed up of it. Way to take someone who is already on best behaviour and turn them into feeling annoyed. And they are paid for this out hand over my mouth bs. Ps I wasn’t over breathing and had someone with me who confirms that and even they knew it was just ‘a move’.

Using fake psych/medicine to achieve other ends no matter how small a liberty they think it is isn’t ok , people aren’t crowd management and given what they’ve put someone of us through by this crap many times a day for decades then such aggressions still being seen as nothing really shocks me. People need to start to realise how much of a weapon their mouthing made up things without critical thinking splitting off vs isn’t just chit-chat but in a discourse analysis ‘being used’ in a way that’s the opposite of health or mental health.

That one was theoretically small fry but it wasn’t funny or ok and made me think they aren’t taught tools but weapons they can get away with using for reasons that are nothing to do with the interests of the patient or healthcare.
 
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People need to start to realise how much of a weapon their mouthing made up things without critical thinking splitting off vs isn’t just chit-chat but in a discourse analysis ‘being used’ in a way that’s the opposite of health or mental health.
Exactly; there is a narrative being created, twisted and directed by those with power against those who have/are perceived to have none.

There was then lots of talk about their tools and toolbox
Responsibility is being reversed so it is on the patient as an individual to resolve system level issues.

Jiddu Krishnamurti: "It is no measure of health to be well adjusted to a profoundly sick society"

Of course people are going to have reactions to being made responsible for consequences of system they have both been abandoned by and have no control over.
 
No, but the populous might vote to say that healthcare and medical research in general need at least adequate funding. They might not but one can hope.
But they might also vote to cut the taxes that would pay for it, and other contradictions.

I remember the time when the Swiss voted to impose quotas on immigration having also voted for a bilateral agreement with the EU which required free movement.

You can usually rely on the majority to vote for having their cake and eating it.
 
Exactly; there is a narrative being created, twisted and directed by those with power against those who have/are perceived to have none.


Responsibility is being reversed so it is on the patient as an individual to resolve system level issues.

Jiddu Krishnamurti: "It is no measure of health to be well adjusted to a profoundly sick society"

Of course people are going to have reactions to being made responsible for consequences of system they have both been abandoned by and have no control over.
I do think these things come alive a lot better with sensible layperson case studies or descriptions and trying the best to avoid academic terms that make something that is happenning every day (and people are being asked to open their eyes - because look, something like this that you must already have seen happen probably and not noticed this was what was going on for various reasons, is an example) put into terms and explained in such a way people can't use the excuse of 'it's too hard to read/understand/is just theory'.

Hence why I wondered a while back whether if it had to be academic then law or philosophy of law (from looking at the epistemic injustice thread and related items) might (? - would love feedback on what area would be best from anyone with experience?) be better and more succinct and without that interpretation of the researcher issue than some of the more sociological models and terms.


This one is probably a new thread - perhaps the epistemic injustic one or a linked off-shoot to that?

If something is made so obvious those who mightn't find it convenient to acknowledge know that many of those around them both will and will get and the examples make their behaviour seen in a different light by bystanders then that's when there is social incentive, or at least it can't be pretended not to be seen or 'they must be doign it for good reason I'm not expert enough to get'.

I do like citing the MIchael WInner car ad a lot where he say 'calm down dear it's only a commercial' (when someone crashes into their car). BUt that got 'it' across enough to be multi-layered tongue in cheek in the 90s in less than a minute.

And how if eg a perfectly well male with no aspects that would mean they'd experienced certain systems or techniques before was put in an obviously potentially upsetting situation such as eg someone crashing into their car and not saying sorry.

And then techniques like calling them dysregulated and not wanting to hear about what has just happened, making them doing nonsense breathing techniques, even just being called 'angry' when/if they weren't at all phased and so on got used how the behaviour certain things purport to be about pathology and curing turns out to be manufactured or exacerbated by such actions. ie common sense.


I keep saying we need something for pwme and/or those disabled that is similar to Everyday Sexism (where it could be anonymous and allow for everyday stories to be brought alive showing up how some of these seem like little things rather than several times every day foot out to trip people up not just 'rise above it' level odd 'said something slightly wrongly' comments)

combined with the tropes that trap pwme and just how many services/extensive the damage goes.

It is all very well for someone who hasn't been debilitated, and the extent of that at least partly due to others 'apparent ignorance/beliefs' as justification for their behaviour, to suggest the disabled re-envision their definition of 'recovered' whilst actively inciting others to make surviving at that same level of disability impossible by claiming they should do all they can to remove things like wheelchairs or adjustments to access appointments for them.

I suspect the author is confusing herself that those words don't mean 'we ain't gonna allow the world to change so put up and shut up and understand we feel entitled to do this and fgs stop complaining about it' as if being disabled antagonises people so... we have to understand it's their fault for wanting a space to exist safely. But that's the issue we live in and that can get concealed by trying to 'reframe' and it's a pretty surreal conversation I've often realised I've just had with friends of certain personalities (and which can pollute research if someone isn't aware to watch out for that affecting things)

- and why I have such a problem with CBT in general because it often disseminates to others that 'change what you can control, accept what you can't' blaa infers all problems that are difficult to fix should be accepted, no matter the consequences, and just saying that at someone stuck due to other people and circumstances magically means there is some safe route even if nothing changes.

When a/if her list of requirements for said ill people to meet (and still not get acceptance or change in relationship because those who believe this are the type who tend to do what they want unless someone is going to catch them and there will be consequences) can't make logical sense to square the circle, even with the lazarus ideology made so densely written most won't get to the end to see the circle doesn't square, then it surely is just a manifesto trying to convince onself about 'deservedness' and 'blame' to think that way towards a group of people - and a certain gut instinct being there but a struggle to explain it in a way that still makes the person feeling it (towards someone ill) a good person.

Maybe I'm just 'reading into this' that vibe but..?
 
I’d be interested to hear your take on this @Valerie Eliot Smith

Not sure if we have any other lawyers on the forum.

Thanks for the mention, Robert.

I read Emily Mendenhall's account of these events and some, but not all, of this thread so please bear with me if I haven't fully grasped the background and issues in this case.

Publishers operate within their own legal frameworks and standard protocols. These would govern the status of the review in question, including matters such as intellectual property rights, confidentiality etc., and everything else throughout the publication process. It's a specialist area and not one that I'm familiar with (insufficient spoons to investigate further - apologies). I would imagine that others on this forum may know more about standard practice and procedure than I do eg. as in @Jonathan Edwards explanation in #117 of this thread.

It does seem curious that Simon Wessely has again exerted such control over the narrative around this illness. It seems to follow a pattern whereby (according to anecdotal reports) he "corrects" authors and commentators and/or threatens legal action and they have withdrawn or amended their work as a result.

I'm not aware of any instances where he has followed up on his threats but would be interested to hear if anyone knows of any times when he has actually instigated legal proceedings. It appears that the threats alone are often sufficient to control debate around PACE and the BPS approach generally.

This continues to be a matter of concern. If publications are properly sourced and it is clear that an opinion is being expressed as part of a legitimate debate, then there's no reason why publishers should cave, particularly if they have obtained responsible legal advice.

However, without knowing the detail and specific circumstances of each individual case, I can't comment further.

[Edited for clarity]
 
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@dave30th Thanks for this write-up.

Thanks for calling out the atrocities playing out in Minneapolis, too. I've been taken aback a little bit if those in the ME/LC community (stateside and abroad) aren't seeing or comprehending what is transpiring in MN. This has ripples to trust in federal government and HHS/NIH etc, if any weren't making those connections.
@Dakota15 I'm in the UK (London). We were watching these events as they unfolded and continue to do so.

We are absolutely appalled, heartbroken and deeply saddened. Our thoughts remain with you and your fellow citizens and I know that there are millions of others around the world who feel the same.
 
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Thank you for taking the time to read and review it.
Mendenhall’s final call is for a kinder, gentler health care system that provides all-encompassing rehabilitation services for complex chronic illnesses, offering whatever “outside the box” and alternative interventions patients find appealing.
It’s remarkable how enticing the belief in rehabilitation is to people. As if wanting to get better will just make it happen eventually.
 
Thank you, @dave30th for that thoughtful and informative review. The book sounds even worse than I thought it was.

She steps way outside her knowledge area into causes of medical conditions and suitable aproaches to treatment. Surely a medical anthropologist has no business stepping into these areas of medical knowledge and lack of knowledge.

She should stick to her field of observational studies of what life is like for pwME and what the medical and care systems and community provide for sufferers, and how sufferers of these illnesses are treated in different cultures.

She has no business pretending she knows what caused our illness or how it should be treated.
 
Considering most of us on this forum are here because of deeply held beliefs in medical culture, which is a big part of what anthropology is supposed to study, it could have quite a lot of merit if people like EM hadn't drunk the BPS kool aid.

All people with an interest in human nature can study it but that doesn't mean you need an academic discipline for it. Journalists are good at commenting. Novelists can illustrate and throw insight. i fail to see the need for students to be taught it as a 'discipline'. Especially if the discipline is based on the indiscipline that the humanities like to specialise in, with no route to reliable evidence.
 
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