Care and Support Plan template free to download, Action for ME

The other thing of course is that they seem to be oblivious to the cumulative effects of activity. So in section 7

adding in a baseline for each activity is a complete absurdity to me...
How much reading can i do? well it depends how far i walked and how much talking i did already that day, its not fixed for each activity.

How far can i walk? well that depends how much reading i did.

Its an overall energy expenditure, not an individual amount per activity. If i do nothing else all day i can possibly walk 15yrds rest and then return. Bit not if i have also had a bath (even with help), then i can only manage about 5yrds. IF i did nothing else, i could read & understand quite a lot, or listen to some music. But if i walked 10 yards and chatted on the phone for a bit i then cant read & understand anything at all, or tolerate the slightest sound.

I cant do combinations of those things, so how could i possibly fill in a baseline for every activity? It doesnt make sense, it assumes that gradually building up a baseline for each activity will work, which belies their assumptions about cause being deconditioning + anxiety.

There is an amount i can do every day, which is as much guesswork as it is skill/judgement, which i sometimes get right & sometimes not. But every activity has to be expanded or reduced according to how much of other activities i've done.

When you have tight budget for food, you dont ask them 'how much can you spend on bread, how much on milk, how much on meat etc etc, because how much you can spend on each item depends on how much every other item was... its a juggling/prioritising task, and the only way to expand how much you can spend on one item is to spend less on another... Until such time as you get more money coming in. (or spend less on utilities/rent etc - which is the same juggling/prioritising problem.

They do not understand this, otherwise they would never have a baseline for each activity to attempt to increase! ITs deconditioning again, like if you walk a little further you wont just naturally read a little less.

And real lives just dont play ball with such a system... because every day you end up doing more than you expect, you spill your tea so you have to clean it up, so now youre exhausted after 10mins on the phone instead of being able to carry on for 20, etc

I mean fine my absolute maximum distance i can walk might be fixed but i could never call that my 'baseline' because it requires me to do absolutely nothing else that day - including personal care.

So its not really a baseline for walking is it?

So should i put my baseline for walking as a distance i could do when i have already had a wash, done my teeth, got cold food, answered 2 phone calls, sent 5 texts, told the delivery driver where to put the parcel etc... well ok then 5yrds, but then that will only be right if i got cold ready-prepared food, rather than heating a tin of soup, so what do i put as my baseline then?

Its just, its absurd. Perhaps it is my brain interpreting everything in a very literal way but.... ????

Its an overall amount i have to "spend" and every single thing i do, including thinking, costs something.

I saw something on MEA fb page where they were talking about sound sensitivity being 'hyperacusis', but completely missing the fact that its not just sensitivity its battery draining as well. - if its silent i can walk further than if it isnt - in loud noise I cannot walk at all.

Sorry that was very long post i likely repeated myself, apologies i went on a rant & now no energy to edit.
ETA: i know i'm 'preaching to the choir', but its all just so aggravating!

 

You’re absolutely right. Its thanks to here that I now refer to “the mythical baseline” as let’s face it, who is able to identify a baseline? At best it’s what I call a “bandwidth”. And it’s impossible to stay within, because it’s much lower than the demands on me. I could give up washing myself and get rid of the cat, ditch leaving the house altogether and quit any social activities such as online, phone etc. It still wouldn’t be enough.

Presumably people who are severe and very severe have it worse, where literally lying in silence in a dark room is still above their baseline, because we all know that if you keep to baseline, you can improve.

It’s like telling people who are in debt to buy less food and rent so they can repay their debt and be debt-free.

We do need some kind of radical patient initiative that doesn’t play nicely and calls this sh!te out.

 

Maybe we should offer them of a list of words that should never be used by health professionals, because they imply beliefs that make them look a bit Aleister Crowley.

Possible entries on the ME Enochian Magic List:

Care
Collaboration
Plans
Treatment

 

MEA and AfME seem to be playing really nicely with Gladwell and the BACME crew. I’m not sure why, but I think it’s too hard to change it from within.

 

I came to the conclusion a few years ago after interacting on a project that Afme , and probably MEA are almost completely geared to mildly affected.

Participation takes a lot of effort for pwME and formats offered are not often condjusive to anyone other than mildly affected , especially if timescales are tight.

Sadly, offerings like this are the result.
A dogs dinner .

 

Even the MEA posts on socials are hard work! I’ve seen ppl comment how it’s hard to follow links, difficult to navigate and the response was just “that’s how SM is configured” actually telling their audience, who are saying”we are struggling” to suck it up.

 

Am I missing something from Pete Gladwell's list of qualifications? Dr Peter Gladwell - BACME

He seems to have a BSc (in physio I assume) and PhD which he did in TENS for pain but is involved in delivery of the Masters level 'fatigue' course

Were there other people involved in this?

Because where in all of this, unless I'm missing something, is the full and broad psychology background that would even fool someone into thinking they had permission to start riffing on the psychology of pwme?

It is seriously dangerous/I think probably injurous to many this idea that physios can 'play psychs' and weaponise things like stupid unevidenced personality ideas and stick nonsense onto patients that causes significant harm and stigma misinformation spreading based on having no knowledge or education at all. They've not been taught how to critically evaluate any papers! Which I guess is why they are so sucking them up like it's vocational fact. When did and why should a vocationally qualified physio get to write personal insinuations about their thinking or who they are over someone's record? that indeed has impacts that I call weaponising because they are significant on people's future choices and impacts their consent and access and how they are heard - hence why the right to real diagnoses is limited to those professionally monitored.

I mean that's what this is, 'pro forma' or not isn't it - it will be someone's individual 'plan' attached to them and their record? Will potentially have an impact of inferring directoins for treatment or support within the writing around it. And ME/CFS does not come with any of these aspects at all as part of the condition, yet this is the stuff not filled in for the individual but there as standard. Any psychology bits should be from those who are from that expert group surely, and only an addendum for those to whom it applies (which I assume they would also note)?

What other condition or part of medicine would allow this. In fact I can't think of a more damaging area for people to be allowed to play around in outside their qualified role as amateurs. You don't get Workwell Foundation doing deaf ears to what the patients say and then sticking their own pet theories onto who they are so they can change their job to something else from exercise physiology and science.

I don't get fully what physiotherapy as a qualification really should be limiting one to, but I suspect it is more about muscles and ergonomics vs the actual exercise science Workwell Foundation did when they picked up ME/CFS and studied their presumptions. To discover it wasn't his definition of 'fatigue'. And he certainly isn't placed to be allowing himself to speak on how pwme feel or think, so this seems very strange to focus on all this material 'around' what should be the core of what he can do?

When there is Workwell Foundation research there to be studied, and other research, and PhysiosforME, Bateman Horne and so on have been working closely with patients and the latest knowledge to develop better advice. Apparently there is a group either with the interim plan and British Psychological Society of qualified psychology experts who actually have ME/CFS or decent experience of it to understand it properly and inform whether any 'psych' would be appropriate/inappropriate to be forced onto/embedded into everything vs actual custom offered courses for issues caused by grief

Neither of these sections should just have been updates from the stuff written based on debunked paradigms from the old guideline. But a chance to, if it was needed, bring in the new experts for those bits.

I know it is hard going back to square one and imagining your knowledge is actually a blank page, because what you thought was expertise is no longer correct, but plenty of people in all sorts of jobs do this regularly to various levels of extent because it is the only way to check your assumptions and make sure things stay relevant, and because methods for such consultation and who you ask is supposed to change to stay accurate. I'd be interested in the process/methods that has actually taken place of rectifying this with learning and proper enquiry into these new areas to get things up to speed and to what extent a 'new approach' to 'new voices and information', and importantly to make sure it is based on good inputs.

 

Yes I saw that and think it is really naughty and stinks.

Reading and ignoring is just dismissing to be accurate. Cherry-picking or misinterpreting is very rude too.


I'm utterly gobsmacked at the gall of both of the charities in these responses as someone who has a background in making sure that development of a service/product is led by and informed at each step by representative input.

What they have done is the opposite of that and it is frankly revolting and predatory to say you read through some comments picked a few you liked and twisted them to claim you've been 'led'. I think they won't have realised what they've done is so serious but it is, no matter the good intentions. You don't get to have it both ways. All consultation should have been from the very initial stages, the starting point should never have been getting out the old 'pre-new guidelines document which was the opposite of the new ones because it had a harmful paradigm' but actually getting proper allies and qualified, represenative patients around the table to decide how the process itself was going to be designed.

Even if they had taken all the comments on board this level of input is the sort of level I'd get if it was a brochure I'd done a full and proper process on maybe one year before for something that had no issues and had not changed - just to keep it fresh and be aware of different frames of reference, or things people might have spotted when using it that could be corrected before a reprint.

You wouldn't believe someone would even hire the same person who did it in 2020 pre-guideline, nevermind just update the old one when everything had finally changed. Changes they apparently campaigned for through all the parliamentary debates and guideline processes and round-tables. SO why are they letting them when it comes to what is delivered then say 'well yep, that old thing that was harmful is fine to just update with your same old small selectively recruited PPIs nodding it through, and we'll read through the comments of real patients that come via social media for any ideas we like at the end'.

If they are being told this is OK by these researchers then their professional associations should be hauling them up, along with their academic employers. What is any of it actually based on that isn't out of date? It's a fraud in my book to infer that means the input of 'those on S4ME' is part of it , or kidding yourself level of delusion that just happens to try and 'close down' those people who they apparently 'read and incorporated' from being read or having a voice about it regarding whether their thoughts are in agreement.

There is a reason why you have above-board processes for recruiting representative samples, and checking that your questions are unambigious and only those for which the sample are qualified to answer. And there is a reason why you would have a sign-off chart and should have a protocol for systemically going through each stage of feedback and demonstrating that it was properly considered and there were good reasons if it could not be implemented - with processes where there were disagreements for the decision-making on what was put down (no reason you can't have both as likelihood it might be different severities or levels of support at home or other situations).

 

I'm also concerned their response to any criticisms might be "We made it available, but you don't have to use it if you don't like it."

A bit like complaining about sexist and racist jokes in TV programmes in the 70s, and the response being "Nobody's forcing you to watch it."

 

It is exactly like that - go into the office/school/hospital the next day and have the same 'jokes' levied at you , OK'd by it must be OK because it was on TV, and a sophist reply pretending it isn't misinformation perpetuating stigma and untruths onto an individual (which is about as intimately violating as it can get really isn't it) via various distribution channels and side-stepping answering it

I think it is time that as a patient community we perhaps need to ask for - from outside the old guard a compiled group, including experienced and qualified patients and with a healthy support team of admins and robust advocates to operate locally (and who have to be listened to) to be allowed responsibility as a stigma-watchdog, and given a heck of a lot of power over all of these to basically slap warnings that mean something serious on anything that contains tropes or is misleading.

Weird that much of their 'help' is actually this, because it isn't help at all but insinuations - you don't write in a document to an OT, OH, or social care via someone's GP or employer that someone with RA or MS 'is perfectionist' and insinuations about 'keeping calm' , 'dysfunction' , 'behavioural techniques' , 'for those who choose to increase their activity' as a pro forma stuck to all patients. Written by a physio who hasn't met any of the people being told to use it to describe their condition to which none of this applies or is accurate. And suggest that's OK.

It's a trojan horse. The one thing that was needed from a pro forma is a bit from physiosfromME on PEM and how it works, along with maybe some Workwell Foundation/Amy Mooney/Bateman Horne links. Nothing else applies to this population - who is Pete writing about?

Plain weaponising from someone not only unqualified to make any of these insinuations but also basing them on research that isn't valid, for others to be unable to remove in writing about people he's never met.

 

You’re right. It’s not good enough.
No more “boom and bust”
No more “if you feel you can increase…”
No more “find your baseline”

 

I highly doubt any professional qualified psych should be writing such things even if someone had any particular mental health condition? That would also be discreet and focused on suggestions of adjustments, because the only point of labels is to preserve such presumption being fed. They certainly wouldn't create a pro forma that didn't apply to everyone, but all with said condition had to have it sent about them anyway - I don't know whether it is ethics or accuracy or what but it's just nonsense.

And they all know the guidelines made it explicit: as a sop they were allowed to offer their CBT based on grief (and not false beliefs or anything like it), sadly with the implicit assumption based on professional ethics this means informed consent to say 'NO'.

Just because someone was allowed to if necessary pass a leaflet on for 'Janet's offering' or even let Janet have a stand in the corner on open days doesn't mean that gave the department permission to make the entire description of a medical condition based on what Janet assumes ['they all have'] based on the small demographic she sees. Or that the condition itself has any evidence of benefit from that. SO it certainly shouldn't be in a description of the care 'everyone' should have or 'about who they are'.

 

On a sidenote, as I was looking up his qualifications I came across this page: Peter GLADWELL | Service lead Bristol M.E. Service | PhD MCSP | North Bristol NHS Trust, Bristol | Pain Service | Research profile (researchgate.net)

Which includes the following in the description:

I have just realised how problematic and contradictory with sense the following claim in his title is in: "His most recent publication is 'Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with ME/CFS.'"

A PROM isn't measuring functional limitation - noticed the wording 'represent the functional limitation'. More on this in next post - because it comes from all the way back with the PACE trial times.

But on that wording - isn't that what this form is actually purporting to do when it is sent off to goodness knows who and where? To me it is closer to a 'narrative' and 'framing of how the condition should be seen' than it is a 'care plan' , reading as someone trying to get the first and last word in of 'what these people have'.

"representing the functional limitation of people living with ME/CFS"

Manage to get just a few thousand new pwme to take this to all professionals associated with them, or get all the clinics to send these around with sort of permission (but not really because you need to comply to keep your job/support etc) to all sorts of agencies. And they get their consistent message, advertising style, read over and over.

Before anyone who doesn't consent encounters their GP or employer or agencies again.

 

This is exactly the reccommendation of the Crawley et al (2013) which included Peter White paper's sleight of hand. Where they basically did another arm of the PACE trial at the same time (but reported their results slightly later) and found out that whilst they could manage to fudge a small outcome from the Chalder Fatigue scale (not a functional measure) their functional outcome measures (including the SF-36) failed.

Treatment outcome in adults with CFS: a prospective study in England based on the CFS/ME National Outcomes Database, 2013, Crawley et al | Science for ME (s4me.info)

So the red flashing warning lights were clearly on in this paper, as they tried to hide that even the outcome measures that weren't objective (like walking test, whether people ended up in a wheelchair etc) showed none of their treatments had a positive impact at all on function.

Then tried to hide this issue in fuzz claiming 'delivery must have been different, cos it worked on PACE' - when we all know of course now (after years of FOIs to get hold of that data) that the figures were changed in PACE, so it didn't. And they would have known this I strongly suspect.

So really they wanted to use a load of words to hide saying 'so let's drop all the actual measures other than the one that we can coerce/social pressure/perceived threats/bias a result that is small from'. And call it a PROM

And this guy has since 2013/14 then being working on just that - taking the CHalder Fatigue Scale, which against isn't a functional measure, and turning it into a PROM that measures not the function but something that incorporates influenceable elements together to probably 'boost' the number they can get out of it by measuring other things. Of course all they are doing is increasing error/bias and combining/hiding anything measuring anything to do with the patient with 'delivery' which entirely uses social pressure - measuring 'delivery'.