What high-quality resources should S4ME produce for PwME, clinicians, researchers etc.?

[bobbler]

The EMEC description is not too bad for what one might find in a medical textbook. But it glosses over so many misconceptions about the illness and uses jargon terms like pathology and prevalence. I think we want something in plain English that patients can understand, but at the same time is also more transparent for professionals because it does not rely on common medical assumptions that don't actually work for ME/CFS.

Personally, I don't care how many people in Europe have ME/CFS. I doubt it matters to anyone except politicians. There is someone in your near neighbourhood with ME/CFS even if not you; that is all people need to know, and best said by 'about one person in 400 has...'.

Yes relevant maybe for funding - particularly research

but in the context of the political ‘support offering’ weve an issue where those numbers are something people try to quantify ti get across (and I remember the trend in the mid2000s of starting to try and get understanding by using ‘that’s five Wembley stadiums’ type thing)

BUT we do such a poor job of getting across 'how disabled' and what the energy envelope (imperfect term but for purposes of the example) maps to as invidious choices , that means people can or can’t do across a day or week to bring alive what it means. Without using ‘spoons’

and how important good furniture etc and noise issues for good rest is because I don’t think it’s understood that exertion isn’t just activity as people think of it but rest isn’t rest and can be exertion if you’re severe and stuck uncomfortable with loud building work vibrating you even if you aren’t ‘moving’ and not rest (and will need more rest in to get over etc)

there’s a few hard concepts to unbundle that are going to be fun challenges on the how do we get that penny drop across front.

So to summarise even in 'describing the size of the issue', it's like them describing the breadth in numbers but not tackling the 'depth' (thinking of people describing a vote majority in an election as broad but shallow), lots might assume that number is mostly people who have it for 2yrs and are a bit fatigued. Not what different levels within that end up needing and can't do and for how long.

 

[Jonathan Edwards]

Interesting, why?

Because a 'passport' is a token of some right agreed by the provider of the passport and the deliverer of the right. Hospitals have not made any such agreement. Therefore a patient coming in with a 'passport' (and also the issuer) is making a presumption. Public healthcare does not work on that basis. You cannot go along with a passport for a hip replacement and insist you have a hip replacement.

Anything with that sort of look - like the AfME card - is going to annoy staff. The only wa to get decent care is to have the system recognise the need and plan for it.

It may sound harsh to say that but if patients take in passports and it pisses staff off enough they may well get sent home to starve like Maeve B O'N.

 

[Ash]

Because a 'passport' is a token of some right agreed by the provider of the passport and the deliverer of the right. Hospitals have not made any such agreement. Therefore a patient coming in with a 'passport' (and also the issuer) is making a presumption. Public healthcare does not work on that basis. You cannot go along with a passport for a hip replacement and insist you have a hip replacement.

Anything with that sort of look - like the AfME card - is going to annoy staff. The only wa to get decent care is to have the system recognise the need and plan for it.

It may sound harsh to say that but if patients take in passports and it pisses staff off enough they may well get sent home to starve like Maeve B O'N.

That’s quite the indictment on the medical profession no?
Annoy us and we’ll let you die a horrifically painful drawn out death. Petty tyrants one and most I guess. Still they do have form. People with ME merely existing and asking for their assistance seems enough to elicit this response all too often.

I mean the whole concept of health passports for us made up by our charities as some kind of futile stand in for medicine sorting this for us annoys me and I wouldn’t be caught dead giving my (non) providers one. But still a bit much to kill someone over surely?

 

[JemPD]

Something else that it might be useful to have (maybe not at first) would be a section for people on how to evaluate claims made about different interventions, not so much to tell people what to think but rather to show them how to think critically about a lot of the information that they will inevitably come across.

I think this is crucial, and infact it should possibly accompany every other document, or at least be referenced on it. Because that is one of the key (not not obvious to the outsider) underpinning principles on which this is all isbeing done.

Because a 'passport' is a token of some right agreed by the provider of the passport and the deliverer of the right. Hospitals have not made any such agreement. Therefore a patient coming in with a 'passport' (and also the issuer) is making a presumption. Public healthcare does not work on that basis. You cannot go along with a passport for a hip replacement and insist you have a hip replacement.

Anything with that sort of look - like the AfME card - is going to annoy staff. The only wa to get decent care is to have the system recognise the need and plan for it.

It may sound harsh to say that but if patients take in passports and it pisses staff off enough they may well get sent home to starve like Maeve B O'N.

I'm afraid I agree. Its some kind of 'info on ME/CFS and how it may impact my care' document that I'm hoping for. Short, to the point and with a focus on it being useful to the staff - ie something like 'difficulties with sensory processing and tolerance (sound/light etc) can cause person's health to deteriorate & therefore complicate clinical picture, cause difficulties in communicating & delay discharge. Therefore whatever can be done to accomodate the patient's needs (such as a side room) will be in everyone's best interests.

I dont think we can force them to do anything, & in my experience the 'i know its a challenge but i would hugely appreciate it & if you want to get me discharged as fast as possible then this will help' has had the most useful effect. What i would really appreciate is those things that PwME commonly need written down in a helpful way, so that i have something to back me up a little when i tell them. Their ignorance on how bad CFS can be makes them look at me as if i were a hypochondriac nutter, so a little back up that they will actually read & take seriously would be helpful.

 

[bobbler]

I think this is crucial, and infact it should possibly accompany every other document, or at least be referenced on it. Because that is one of the key (not not obvious to the outsider) underpinning principles on which this is all isbeing done.

I'm afraid I agree. Its some kind of 'info on ME/CFS and how it may impact my care' document that I'm hoping for. Short, to the point and with a focus on it being useful to the staff - ie something like 'difficulties with sensory processing and tolerance (sound/light etc) can cause person's health to deteriorate & therefore complicate clinical picture, cause difficulties in communicating & delay discharge. Therefore whatever can be done to accomodate the patient's needs (such as a side room) will be in everyone's best interests.

I really like that term vs 'sensitivities'

 

[JemPD]

I really like that term vs 'sensitivities'

I honestly believe the term 'sensitivities' has set us back in the attempt to get others to understand. Certainly in the uk it conjours a picture of a person who is frankly a bit wet, needs to toughen up, & those 'sensitivities' is something that staff really dont need to bother with - oh well she's sensitive to light, diddums, i'm a nurse thats not my problem.

'Sound sensitivity' is certainly always in my experience mistaken for something that makes me anxious or they think that i simply dont like it. I never ever tell anyone i am 'sensitive' to anything unless i mean it in an emotional 'sensitive soul' way.... for example that i am sensitive to violence in tv/audiobooks so must avoid. People get that, they understand that it upsets me, which it does.

But my sensory difficulties mean that even sound that l LIKE and ENJOYis a problem - with either enough of it or if i already struggling, it causes me pain & deterioration to the point that I cannot physically or cognitively function. So the term 'sensitivity' does not at all accurately convey the fact. And personally I think it should be dropped asap if we want anyone to understand us, but thats just IMHO.

'Tolerance' isnt much better because it conjours a picture of someone who refuses to tolerate something they dont like. A domineering entitled type - For example "i do not tolerate abuse of any kind".
But its better than sensitivity given the current misconception of us as being a bit pathetic.

I dont know what the answer is.

 

[Ash]

I think this is crucial, and infact it should possibly accompany every other document, or at least be referenced on it. Because that is one of the key (not not obvious to the outsider) underpinning principles on which this is all isbeing done.

I'm afraid I agree. Its some kind of 'info on ME/CFS and how it may impact my care' document that I'm hoping for. Short, to the point and with a focus on it being useful to the staff - ie something like 'difficulties with sensory processing and tolerance (sound/light etc) can cause person's health to deteriorate & therefore complicate clinical picture, cause difficulties in communicating & delay discharge. Therefore whatever can be done to accomodate the patient's needs (such as a side room) will be in everyone's best interests.

I dont think we can force them to do anything, & in my experience the 'i know its a challenge but i would hugely appreciate it & if you want to get me discharged as fast as possible then this will help' has had the most useful effect. What i would really appreciate is those things that PwME commonly need written down in a helpful way, so that i have something to back me up a little when i tell them. Their ignorance on how bad CFS can be makes them look at me as if i were a hypochondriac nutter, so a little back up that they will actually read & take seriously would be helpful.

I think having to crawl to people who’re making your life miserable is regrettable but we are where we are.

I was thinking of something which gives an over view for someone with little time and little interest on what ME is and what it does to a person severely affected in the context of light sound etc so it doesn’t ask for anything except where quoting NICE perhaps but just covers what is.

I’ve never been admitted to hospital. I have had to go to A&E the staff have treated me more poorly than usual when I attended wearing a mask for Covid in twenty twenty one even back then they were over precautions. Plus at my next visit I don’t remember what year. So I think doing anything different like masking or wearing sunglasses or sitting down on the pavement outside to wait which is fine for smoker apparently but not people feeling nauseous, none of these things were l requests for access.

Now the reception are usually lovely, but the triage medical staff are usually awful. This because my local department is a crappie place where staff are often sour faced mean and petty to everyone. Has been like this for as far back as anyone can remember. So granted these people are on average not the most open minded you could meet in a hospital setting.

Still I do think that this experience of a drop off from bad to worse in staff attitudes with visible signs of difference over none, along with other indicators over time points to it not necessarily primarily being about what they might have to do for or offer the patient with different requirements, so much as professionals not wanting to offer anything at all to certain kinds of patients.


I think info about ME for people going into hospital could help because it depersonalises the condition a little. So mostly doctors and nurses seem to think along with everyone else that if it exists at all ME is CF. A document that explains this without smuggling in a load of guesses about the state of things is a good basis for advocating for yourself or your care as best you can manage is something I think is very necessary.

Probably an even shorter summary version of something that we’d use for a GP or as a universal document would work fine maybe with some part of it kept with more detail that being the hospital related stuff whatever that would be.

 

[Ash]

I honestly believe the term 'sensitivities' has set us back in the attempt to get others to understand. Certainly in the uk it conjours a picture of a person who is frankly a bit wet, needs to toughen up, & those 'sensitivities' is something that staff really dont need to bother with - oh well she's sensitive to light, diddums, i'm a nurse thats not my problem.

'Sound sensitivity' is certainly always in my experience mistaken for something that makes me anxious or they think that i simply dont like it. I never ever tell anyone i am 'sensitive' to anything unless i mean it in an emotional 'sensitive soul' way.... for example that i am sensitive to violence in tv/audiobooks so must avoid. People get that, they understand that it upsets me, which it does.

But my sensory difficulties mean that even sound that l LIKE and ENJOYis a problem - with either enough of it or if i already struggling, it causes me pain & deterioration to the point that I cannot physically or cognitively function. So the term 'sensitivity' does not at all accurately convey the fact. And personally I think it should be dropped asap if we want anyone to understand us, but thats just IMHO.

'Tolerance' isnt much better because it conjours a picture of someone who refuses to tolerate something they dont like. A domineering entitled type - For example "i do not tolerate abuse of any kind".
But its better than sensitivity given the current misconception of us as being a bit pathetic.

I dont know what the answer is.

Well tolerance is bad from a societal social perspective because of how people typically use it in everyday language. But it’s good and accurate from a medical perspective, in medical terminology.

 

[Trish]

Right now in the UK asking, however nicely, for any special provision in hospital is a non starter. They are overflowing with acute infections on top of everything else. A friend's father in law who is very sick and unable to keep food down or walk without falling spent 36 hours on a chair in hospital a few days ago before there was a bed for him. Forget private rooms. They're all used in an attempt to isolate infections. They're in constant crisis.

 

[JemPD]

I think having to crawl to people who’re making your life miserable is regrettable but we are where we are.

I agree, it's crappy, but i care more about getting the best outcome possible.

I was thinking of something which gives an over view for someone with little time and little interest on what ME is and what it does to a person severely affected in the context of light sound etc so it doesn’t ask for anything except where quoting NICE perhaps but just covers what is.

yes good

 

[Ash]

Right now in the UK asking, however nicely, for any special provision in hospital is a non starter. They are overflowing with acute infections on top of everything else. A friend's father in law who is very sick and unable to keep food down or walk without falling spent 36 hours on a chair in hospital a few days ago before there was a bed for him. Forget private rooms. They're all used in an attempt to isolate infections. They're in constant crisis.

Yep.
One might think hospitals w’d try to get involved with some prevention policies under such conditions. One might think.

 

[Haveyoutriedyoga]

Because a 'passport' is a token of some right agreed by the provider of the passport and the deliverer of the right. Hospitals have not made any such agreement. Therefore a patient coming in with a 'passport' (and also the issuer) is making a presumption. Public healthcare does not work on that basis. You cannot go along with a passport for a hip replacement and insist you have a hip replacement.

Anything with that sort of look - like the AfME card - is going to annoy staff. The only wa to get decent care is to have the system recognise the need and plan for it.

It may sound harsh to say that but if patients take in passports and it pisses staff off enough they may well get sent home to starve like Maeve B O'N.

Very useful insight, thanks.

 

[Haveyoutriedyoga]

Yep.
One might think hospitals w’d try to get involved with some prevention policies under such conditions. One might think that.

How?

 

[Creekside]

I disagree. We're trying to get away from diagnostic criteria such as Fukuda and Oxford that don't require PEM.

I'm not suggesting that the general diagnostic criteria shouldn't require PEM; just that it isn't 100% required, and that some people will meet all the other criteria yet lack PEM, so there needs to be at least some allowance for that. I had pretty classic PEM and then cured that and still have the other ME symptoms (just not getting worse after exertion), so did I suddenly switch to a chronic disease that is not ME? Shattered bones and bullet wounds have clear yes/no criteria, but ME isn't that easily defined.

 

[Yann04]

I think it’s a slippery slope saying oh but what about the people who kind of fit the definition but not really and continuing to expand the definition until it is diluted so much it doesn’t mean anything anymore (ie. Oxford criteria which is simply “fatigue”).

 

[Creekside]

9. How to interpret anecdotes about cures/improvements from e.g. supplements, Lightning Process

I'd like to see that part of general education. Start with elementary school, maybe with examples of toys that look awesome in commercials, yet are disappointing in reality. By high school, the examples can be about fads, amazing diet claims or business opportunities. Training in rational thought should start early.

 

[Creekside]

I think it’s a slippery slope saying oh but what about the people who kind of fit the definition but not really and continuing to expand the definition until it is diluted so much it doesn’t mean anything anymore (ie. Oxford criteria which is simply “fatigue”).

Any tool can be used well, or abused. I was thinking more along the lines of a note somewhere in the criteria saying that a lack of PEM is not absolute proof that someone doesn't have ME, the way a lack of high levels of arsenic is proof that the symptoms are not due to arsenic poisoning. Maybe 90% of people have definite, reliable PEM, but that still leaves 10% who might be denied whatever benefits come from a diagnosis. They could get an official diagnosis of non-standard ME. What value that diagnosis has depends on the situation, which applies just as well to a diagnosis with PEM, because meeting the CCC or ICC doesn't prove that the person has the ME mechanism; it's just an agreement that the person probably has it.

 

[Trish]

I'm not suggesting that the general diagnostic criteria shouldn't require PEM; just that it isn't 100% required, and that some people will meet all the other criteria yet lack PEM, so there needs to be at least some allowance for that. I had pretty classic PEM and then cured that and still have the other ME symptoms (just not getting worse after exertion), so did I suddenly switch to a chronic disease that is not ME? Shattered bones and bullet wounds have clear yes/no criteria, but ME isn't that easily defined.

I think that is easily covered by saying someone who had PEM but now doesn't but still has some symptoms has ME/CFS that is in partial remission. My point is that someone who has other ME/CFS symptoms but has never had PEM as part of their symptoms does not fit ME/CFS diagnostic criteria, so by definition does not have ME/CFS. They may be very sick but not with ME/CFS.

 

[Creekside]

I really like that term vs 'sensitivities'

Might "hypersensitivity" be a better term than intolerance? It might better communicate that it's a biological dysfunction, rather than a psychological "not liking" something. There are probably some well-understood types of hypersensitivity, with explanations involving calcium imbalances or genetic defects that could be used as examples of non-psychological hypersensitivity.

 

[NelliePledge]

I’d like to throw in a couple of practical points for consideration.

I think it is important to consider what the purpose of the product is, who the audience is, style of writing, format etc

My suggestion is


the audience is a person who is trying to understand if they have ME/CFS

the product is a succinct, clear, scientifically sound, explanation of the illness ME/CFS, how people can be affected, what may help with symptoms, what worsens symptoms, recommendations sources of more detailed information.


The format should be as a web page that is easily printable, it should have a plain English clear style for ease of reading and comprehension. And minimal text formatting, no use of images or colours. It should be accessible for screen reader software.