Sudden realisation(trigger warning)

The Ed Yong piece has been going round my head for a while now as it gave me a new perspective on my disease too.

I think it's safe to say that at this point I have no life and I have no future. That may sound dramatic but to me it isn't. It's stating the obvious. It doesn't make me depressed, it does give me a new sense of purpose.

The past years I've been able to do teeny tiny bits and pieces of things I'm passionate about because I've had a bit more energy. But it's pretty far from having a life as rich and full as even my elderly aunts and uncles have.

Which begs the question, how much time do I have left and how do I change my current situation. I plan on still doing things that are fun to me but allocate a fair bit of that extra energy I'm having into advocacy.

 

The way I plan on go about doing this is letting the people I sometimes have contact with know that I have ME/CVS. I'm gonna use some of Yong's wording in describing PEM and the annihilation of possibility combined with saying I have no life or a future at the moment. After that I hope I can steer people towards donating in a subtle way by mentioning there are researchers doing work but they are underfunded.

People close to me know more or less what I'm going through, but I feel a sense of urgency is missing. So I hope I can instill that in the healthy people around me.

 

Hey @Solstice, thanks for sharing. So sorry it’s like this. Glad you can see a purpose anyway.

 

I think our advocacy needs to be overhauled from the ground up. Lone patients telling people they know about the illness will get us nowhere. We need a big numbers approach.

 

Important point. I'm embarrased about having failed to achieve anything in life. I'm also not open about my illness because when I'm meeting new people it will be a good moment where I don't look sick and saying that I have a devastating illness will make me look hysterical or like I'm inventing excuses for personal failures.

At the same time people can also quickly tell that I'm not normal so there is the urge to not leave them guessing and explain.

And faking being normal and well is exhausting.

What I really need is the feeling of being accepted by society and family as I am, and to somehow find my place in society.

 

Umm. @Hoopoe. I feel it too.

It’s interesting that looking sick aspect. I think we do look sick much of the time but that’s not the time we’d be best able to talk to people about this. Like going to the dr with acute symptoms and finding that after all the effort to get there, you’d feel too bad to explain it all.


I don’t think illness being invisible is the main difficulty though, it’s a culture of suspicion of sick and disabled people, and the healthcare system as it is set up for us is one that demands ‘proof’. And in the absence of this, whatsoever it would be, just moves straight to disbelief. Absence of proof is proof of absence. Proof of disability is proof of disbelivability. In the case of M.E. there is another layer to this suspicion cake, because people are told by professionals of the highest status in healthcare authority’s that our particular ailment is specifically believing ourselves sick, when we’re not.


Edit: typos

 

Agree - I've always been open with colleagues as I realised early that it was a stigmatised condition and I thought that people who knew me might then see that in fact it didn't happen to some conveniently othered group, but happened to people just like them - even, you know, male doctors. I didn't know then quite how stigmatised it was and quite how much of a hash medicine has managed to make of this. Interestingly I found later that people had been reluctant to say anything, just a nebulous "he's unwell" — I don't know whether this was due to patient confidentiality (despite my opposite request) or maybe an unconscious desire to just not talk about it.

Anyhow, yesterday I discussed with my GP and suggested it would be good to formalise a specific diagnosis of ME/CFS on my record and have this coded and counted. I guided them towards the IOM criteria which are easy to work with and I would qualify.

 

Yeah. I don't know how to do a massive effort, but I do think the individual effort is sometimes underestimated. A number of years back I asked people to sign the petition to ZonMw to change the definition of ME/CVS, I was on several tight-knit football(soccer) forums, my parents also asked family members to sign. It was very gratifying to see a great number of familiar names show up, I think it yielded about 100 signatures all in all.

Individual effort on my part helping the greater effort of the petition. The ME The Hague team gathered more than 40.000 signatures with individual patients playing important roles in gathering. It ended with the promise of new guidelines getting drafted and the 28,5 million euro allocated to ME. We now have a gargantuan task again to get it properly allocated with many individual and concerted pushes.

 

It also reminds me of when I was still able to coach football/soccer. One of the mothers had a kid with ME/CFS who regularly asked me for information which I in turn got from forums. I think mainly PR at that time. So there was this cascading effect of knowledge being shared. I mentioned Yong several times now, if I had his article back then I would've simply showed her that. And be much better able to explain to other parents and possibly kids I coached what I was going through.

What that also does is, next time they meet someone with ME they already have a bit of good information so the next person won't have to entirely explain what he/she's going through.

 

We’d have not got the NICE guidance updated without individual patients leveraging all their personal and professional contacts. It did also involve coordination from groups but most us had to have personal conversations and one on one direct written correspondence with people in-order to ensure we were able to overcome people’s personal reluctance to get involved with this weird thing that is M.E., but it worked. We demonstrated public interest.

I think getting people used to thinking about our situation as it really is probably needed before we can persuade them to fund our salvation.

 

I assumed the massive effort was a small amount of effort coming from a lot of people, not lots of effort coming from individuals.

 

I've always told everyone who asks about my illness. Nobody's scoffed at it, and thankfully few have said "Have you tried...?". But I've needed a wheelchair outdoors for most of the time since my diagnosis, and that will make a difference.

I don't think I've ever felt as if I haven't achieved anything, though. I have ME and autism, but I've survived, supported myself, found what I need, enjoyed things. I learned the knack of achieving contentment quite early on, and that's a precious thing.

I admit I'm not good at ME advocacy, though. I get distracted because the world's full of wonders, and by the time I come back to it, I've used up my energy. It doesn't come naturally and some of it's well outside my skillset, but I do need to get better.

 

It isn't easy. I don't like signing letters that I haven't read and reading still costs me a lot of effort so I can't always contribute. Many struggle with that I suppose. I consider telling people about your illness advocacy though, an invisible disease made visible.

 

Actually I think that patients historically not having told or corrected people they know has been a major issue in the predatory awful stuff I've had thrown at me.

I believe that for those who are most targeted by the awful culture and people who mightn't think of themselves as predatory people (turning up 'wanting to help' and you don't even know them/maybe met them 20yrs ago and then basically hurting you for 2yrs with awful tropes being thrown at you leaving you in terror and feeling very unsafe indeed) if those who were actually their 'friends' who they cite as 'recovered' or getting on ok had pulled them up then those more vulnerable would be less targeted and bullied.

There are few who are in that position, but there are those. The people who are having to work to keep a roof over their head still, those who are children and have children who are vulnerable due to the awful situation there, those who are young and disabled or alone re: support are in very different positions to those who had careers and don't/can't have these 'rewritten'. By that I mean if you get worse when you are a professional with only 15yrs within a few years people pretend you were never a worthwhile person anyway, it is harder for them to not acknowledge you are the same ex-nurse, manager, solicitor when you talk like one and note what you can't do than when you've people arrogantly and awfully closing their ears to you and telling you before you've even been allowed to speak on your illness and note yours is severe and you've had it 25yrs - your whole adult life - whilst you did your job and it isn't like their mate. And their mate probably also doesn't think it is just a little thing either.

But there are such pats on the head to be had in the past vs unsure how some will react from 'going along with' what is actually bigotry.

I think what @Solstice has said is a revelation. Because it is about being given permission to have your own truth. Even if still the mad nutters of the world want to suffocate that out of us to play along with fake narratives. And those out there in the world get forced into it, as if them being not very good on the adjustments but adding the odd 'fop' of you do pretty well given your struggles is enough. But we aren't allowed to actually say, well really, given the PEM I need a bungalow, wheelchair and so on because why should I live most of my hours unable to even think or move just so the laypersons don't see me wheeling instead of walking for that 5mins. That latter expectation is still where we are at. Where those who 'can walk' even if that means not being able to do anything for the next 2 days are still expected to by bigots. And we inernalise it.

Until amongst all we all begin to get our vocabulary together and can start understanding and speaking to the condition well - which means understanding the spectrum and the exponential (rather than 'graded') impact an increase in severity has on constraining life (and for that matter the 'PEM' or Crashes that noone sees because even if mild we are too ill to have anyone near us when in that), independence, ability to survive and how horrific it is (and then you can't advocate or be seen once you are there, you can't even stop someone at the time from hurting you by saying 'no' assertively which is the scary bit), then we aren't a 'team' moving forward but a group where most will undermine us. And we do need to work out how to differentiate those with PEM ourselves and severe debilitation from those who go around claiming they've recovered or got under control from when they were tired once for a year or two and go around espousing as if that's advice for those who have something they've never experienced. The disunity and identity is a massive issue caused by having had such a complex undermining of every element we might have to explain of a complex, intimately disabling in every aspect condition when you have short energy and are communicating to short attention spans.

 

I think having articles that back this up makes a huge difference. It is hard to describe a whole world to people. And the information on energy-limiting is so poor.

I do like the video-game idea where for example you have an alarm going off which is draining your egg-timer, but you'd have to climb the stairs to turn it off type dilemmas and then you ask people to plan their energy for the day and then the door knocks with a neighbours parcel (and you have to think ahead to when you might need them to take one of yours vs the now when you are in PEM), or when someone is being anti-social and you have to guess whether using energy to try and eiher ask for e.g. the musci to be turned down will change anything or just expend energy and change nothing, how that other person 'having a stress' at you took 2 days of being unable to function whilst they went away 'feeling like they got it out' and then turn up at the end of the week wondering why your house is a mess.

NOT the fictional 'pick the few tasks for the day you have energy for' because for many you have less than for doing nothing and are choosing between essential things and things that if you don't do them will have worse implications

AND for it to emphasise how you could be saving energy on a phone call being made easy, or someone just not making something hard or dropping that thing off without too much trouble (but they want to have a rant instead) or because a walk or high cupboard takes so much out of you having an adjustment for it - with no detriment - but society bans you from it and makes it socially unacceptable for no reason other than their bigotry. How starting work 1hr late could mean you function and miss traffic and if you had a parking space by the door you could do a days work, but 'just for the sake of it' either not letting you start late or making you choose between doing so and parking miles away having driven round a car park or schlepping through traffic makes not just the day impossible but by the end of the year you more disabled.

I think we have so much embedded bigotry even those with the illness internalise and we do to ourselves that I agree it begins with us, and also note that we need help to make it possible. Because even one sentence statement that makes sense to us, when met with a rhetoric-driven bigot (which sadly is most people around me, not because they are particularly horrible but because that seems to be what people are trained in without realising it over time) gets pulled apart with 'faux-snort' of 'surely not' to each element of it 'surely you can x', 'but can't you y', 'it's not cancer you don't die' - and ends up in 1hr of barrister-like awfulness of fallacial poor thinking from an idiot. An idiot who a decent culture with good diagrams would stomp on. But it has given them permission to have a field day saying 'everything is a debate' - and that 'debate' is what kills us. By a thousand paper-cuts, except those paper-cuts come in their thousands within an hour in a row, and are directed in such a way to prevent us from even moving one little tiny need forward, so even a phone call or getting food or where your soap is put being somewhere that doesn't harm you gets prevented from being fixed by that 'encouraged harmful behaviour towards us'.

I don't know how, without the framework to stand behind us and all being able to simply say 'this is bigotry and what it looks like, this is harm and abuse and what it looks like' and we all then begin standing behind it and standing up for each other, we can begin to change things. And any of the simpler ways of communicating (like saying it is fatigue or you end up 'paying for doing things' etc) all short-cut the nuance and end up misrepresenting the key elements that mean these behaviours of others cut us off at the knees all the time.

 

I am very grateful for this thread. It really resonates with me so much. I had the same realisation recently; the cavalry aren't coming. I am probably not going to get better in my life time. It is so brutal.

It is hard not to be consumed with frustration that we could have been in a much better position now, if egos and money hadn't got involved, and that I am forced to think about how I live any kind of meaningful life because of someone else's choices. That is a very bitter pill to swallow. Especially when my choices are so limited

It has driven me to do a lot of activism work over recent years, but I have even had to let go of much of that, thanks to repeated bouts of covid. If I thought ME was bad, LC adds a whole new torturous dimension. I have a friend going through chemo who has more of a life than I do, and is almost 30 years older.

Stepping back from activism feels like the b*stards have won and it is hard watching people in your life move on and make plans when I am taking steps I had not expected to need for another 40 years and my elderly parents don't even need yet.

Ed's article is great, but I am not sure it completely captures the total devastation this illness causes and the constant fear of "what if I get worse?"

This a tough conversation, but a much needed one.

 

Aside from decodeME, which I think is a really promising study, there is no rational reason to think otherwise.

When 99.9% of the scientific community is completely unaware of ME or thinks of it as a non issue, you can't really expect any progress to happen. We have seen that with long COVID, turning on the money shower achieves little to nothing because nobody is motivated to figure this out or at least find something that helps the patients. Many illnesses found a treatment through trial and error even without knowing the cause. I think there's a high chance that if doctors started trialing all sorts of immune drugs in ME we would have one that works by now, even if we wouldn't be very confident as to why.

The NIH spent almost a billion on long COVID and they are just... waiting to see what happens. While paying themselves fat checks in the meantime.

The fundamental problem is that when people look at ME, they don't see anything to treat. They don't even understand what they are supposed to be looking at, they kinda just sit there with a puzzled face. And this is absolutely not the case with mental illnesses, by the way. The problem there is usually apparent even if often untreatable due to the complexity of the brain.

I actually think that, by and large, the whole psychosomatics debate is not that relevant to ME. The UK is an exception, with powerful lobbying psychiatrists, but in most other countries it's mostly just a bunch of people with a confused look on their faces at best, and completely unaware of the problem at worst. You see sometimes talk of psychosomatics but it's mostly because they don't know what else to say, rather than truly having conviction in it.
And also, psychosomatics is a concept from medical culture, in the pharma world nobody cares about such a thing, they are pragmatic businessmen that only care about treating something tangible. Most of the innovation biotech wise comes from that world, not from your GP or neurologist blabbering about psychosomatics.

I wonder, then, if the key out of this stalemate, would have been to involve a group of high level scientists, engineers and physicists to try and find something measurable about the illness, symptoms wise, to be able to put us in a firm category. I don't think my symptoms are subjective, they just haven't been measured yet.