UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

I'm horrified.
There definitely seems to be disproportionate representation of BPS views, which get described in detail repeatedly without any qualification around their conflicting / vested interests, which don't see to be recognised.
This very skewed output has very worrying implications for what may happen next to the plan .

Is there anything we can do that won't hinder more than help?

Like highlight the conflict of interest of most stakeholders spouting bps nonsense and reiterating researched facts about recovery rates, lack of evendence of BPS causation model, waste of resources covering same old ground which has not aided patients??



Edit - typos / grammar

 

Reading some of the responses on this thread, I would recommend that people read the consultation outcome document on the gov website. Yes, there is some appalling nonsense in it, which has been highlighted in this thread. But I don’t think that should come as a surprise. The BPS people and others were always going to submit unhelpful comments, so it should not come as a surprise to read them in a document which appears to be a neutral summary of all the feedback that was submitted.

Thankfully there is also a lot of very sensible content in the document. We just have to hope that those who are drafting the final delivery plan are able to differentiate between the sense and the nonsense.

[edited to add link to document]

 

Can't help feel that the ducks are being lined up
Cochrane, PROMS , lack of change following revised NICE guidance , continued lack of funding , missed opportunities as control groups for LC, continued rise of psychobabble........

 

The history of ME/CFS certainly suggests that we would be well advised to prepare for the worst and hope to be pleasantly surprised.

 

Thread by @Karen Hargrave

https://threadreaderapp.com/thread/1869694470939398544.html

 

This has never failed me.

Not once.

 

I think the biggest thing is the "further evidence of having ME at the bottom". I am now compiling a letter around that and in the New Year will be holding them to all of it.

I did not have time to read in detail all that was written as I have learnt from experience very few if any medical professionals read that intently as they are far too busy. However quoting from the papers at the bottom and sending the link might just help

They have started - the psycobabbleers using the term PEM, so I think you are right.

However, the use of the lived experience and what is basically written is that the conflict between stakeholders needs have been put above those of the patients and that needs to be discussed with APPG, DWP, NHS, MPs, commissioners and charities to hold them to account. The need for them to work together in taking PACE down is what is needed.

However at the bottom there are a few papers that can be used to wash out the psycobabble and which can be quoted and linked to the relevant points. I am now compiling such a letter in the vein hope it may just help.

 

To whom @Tilly ?
Do you need any assistance?

 

This, like the WASPI women announcement left until the very end of the year. Neither charity has posted anything yet

 

‘Recommendations to make assisted dying available are required’



This is outrageous and unethical

Edit: added ‘are available’

 

I’m just done with the needs and lying voice of the people who abuse us being prioritised over the voices of the most abused, even when it’s supposed to be the part where it’s not even the come to Jesus moment but just writing down what it’s done and what it created as a world for some -

this allows them to when we try and answers ‘what crap do you get each day that stops you accessing basic rights other humans don’t even notice they have ?’ Still speak over us us with their abusive delusions saying lies about who we are that are the very things used to make even have conversations to fix this or sort an adjustment absolutely impossible because instead of even just starting from zero and getting someone listening to you for you let sensevthis lot are telling them ‘they are a bunch of mad nutters you need to pretend to be kind with whilst shoving them off with nothing because it’s all just in their mind’ .

I ring up to access something important asking for a conversation to be shortened to be accessible and get abuse in response which is what they’ve orogrammed into these people - so when you say energy limit and it’s a two minute sentence they are taught to not listen but pause til they’ve stopped speaking or don’t even do that and interrupt then tell em to get lost and upset them (so you’ve evidence of crying to pretend it’s their emotions causing it) inferring if they just had counselling to deal with being banned from the world having just getting prescriptions or help with a form made impossible without hurting them so the next time it’s more impossible and we know well eventually not even be able to talk from the over exertion they won’t acknowledge causes this continual downward heakth but dies they’ll then instead of accepting this was the consequences of their disbelief accuse us of ‘hysterical mutism’

this is a living nightmare or what happens when you allow a bunch of people no other patient of illness would have bear them - so nowhere else to go because they don’t want to change or do a job kindly - to do what they want to one of the most vulnerable groups there are, specifically including making up lies about them to undermine the truth about what harms them and who they are. It doesn’t feel much different than bystanders watching an abusive partner with a crying wife say ‘ignore her she just has emotional issues and I do my best but it’s a real strain on me always looking after her crying’ and the bystander hugging the abuser for being a hero whilst the partner looks harrowed and has been trying to explain to the bystander they have an energy limiting condition where dragging them out of the house cases payback etc but the bystander prefers the other narrative as they don’t need to do anything morally. The world keeps turning. The only ‘problem’ is the person ‘being sad’ and everyone else doesn’t have to offer adaptations or reasonable adjustments of have a word etc.

To have git our hopes up and encourage us to use our energy for tooth brushing to start trying to be brave enough to say how bad things are to us and how their behaviour isn’t just a bad paradigm but some of those on the ground are gobsmackingky abusive in time and body language when stuck in a room with them (and complaints ignored or held against us and just another chance gir lies to be out in our notes) . And say which lies are being used to stop us even being heard - and that need to not only change but have penalties associated with them so people using those slurs lose jobs and are looked at by society as the bigots and unkind people they are even if we do still have to experience them.

the culture has to change - we can’t have the people being allowed to call themselves experts or experienced in us when all they did was abuse us by domineering who we are with a fake narrative to impose treatment and s himostike environment that harmed in some lie that we’d all ‘give up being ill because it was a choice’ and say these same people can deliver both care and freedom from this propaganda that has taken away even us being acknowledged fir who we are and what we’ve done instead of their lies.

and I think of things like the Rochdale stuff where no one listened then because they assumed all sorts about those girls.

but by a certain point those who did do that assuming were hauled up called out and told to change. They weren’t given equal voice over ‘what names do we call future girls’ to allow them to pretend they are kind gif inferring the same slurs but it’s ok cos they are just mad.

 

The current suggested UK legislation is for assisted dying available only to the terminally ill with less than six months life expectancy.

I am not sure what my personal views are on the issue in general, but I would be wary of any exception in a general law being created specifically for people with very severe ME/CFS and would argue that at present life expectancy may currently be more determined by the UK health service’s failure to support the general needs and the alternative feeding requirements of these patients than by what is inherent in our condition.

Any action plan should be putting addressing the needs of people with severe ME/CFS as a priority and only once that has done can questions about life expectancy be meaningfully answered.

 

Andrew Gwynne also speaks of ME or CFS in his tweet.

I worry about this. Are they thinking of separating ME from CFS?

 

I'd probably give him the benefit of the doubt, for now at least. He's unlikely to be familiar with recent thinking about how to use the name.

 

I think it is merely a reflection of the fact that at the political level, as well as the policy-building level nobody involved actually knows what this is about.

 

I had a home service phlebotomy the other day for something that could take ten mins and I’m very ill. Before the draw I need to take all my meds, dress enough, get my forms (downstairs somewhere but I can’t come back up once I’m down), but most importantly to get any blood from my arm drink slowly a large amount of fluid not more than 30mins before. The appointment was the one choice they gave me as they prefer mornings (and I need the latest in the day) so it’s early for me.

I paid a lot for it and all I needed was for the appointment I was given to be at the time booked (or even if ten mins late that’s fine if they’ll let me wait in bed then I’ll come to door when they are there). And to not be talking at me but listening so that I have the space to instruct so I remember to say use x,y,x otherwise it ll leave me in pain for months.

well those who experience me/cfs with no protector will know what 60% of people and situations are like. You explain these expectations - and they aren’t big things, no not ill person would put up with (but would have the strength to enforce and the choice to go elsewhere for other options). And you’ve just wasted your energy to a phone person who doesn’t listen just wait for their turn to speak.

I get a call 30mins before from her telling me ‘just to let you know x is leaving now’ and this time say (thinking ‘no you are not gaslighting me for them to turn up early cos they fancy and at the same time talking down to me like I’m demented and can’t remember) ‘oh when dies that mean they are arriving?’ and am met with silence as if I’m just being told and am being rude for asking, so repeat because I guess I might be able to just about manage 5mins early but that will require a big push from me at that notice but I can’t do any earlier’. For context I’m pretty sure the previous x times with this person they’ve turned up like 20-30 before my appointment time and then when I’d phoned the office I’d had politely said snide like ‘make sure you are ready’ for later appointments as if my disorganisation at that turning up early had been reported but either not the reason (early arrival) or the office didn’t care.

of course they turned up five mins early - and fir me the moral obligation as I see it is that ‘if I can’ I’ll do five mins before but I’m not now ‘late’ for being on time. I grab my forms in a rush and knock over a box of filling that goes everywhere - all just because someone else deemed their needs more important. I can’t bend down without exacerbating other injuries for often four weeks of pain.

when I let them in I actually say oh look at what’s happened and show them that knocked over (to make a point) I then say I have the forms but haven’t double-checked them (as that’s the five minutes they nicked off me) . They start on my arm and are doing the starting to infer I’m now upset not because of their behaviour but because‘I’m an upset person’ and pretending to care and saying ‘ooh do you get out much what are you doing for Xmas’ and not hearing I can’t do much but instead hearing it as ‘so that’s why you are sad’. Then said ‘do your friends visit’ .. (great another chance to decide whether to say the truth or lie bith of which violate me ). I suddenly realise they are using the wrong being that is over a nerve in my ekbliw and it’s too late but hurting and say ‘please be very gentle as my veins bith collapsed in august so I need to be very careful’. They then say ‘so that’s why you are stressed and flustered’

it was just one reversal of truth being pinned onto the situation after another. And this bs bps ideology is utilised merely to push lies covering up hurt being caused at the time. Hilariously as the gaslighting continued I was so upset by the end of this appointment (and I’m not easily upset except by the type of people who do it deliberately using exactly these bps lies to antagonise and enjoy watching me get upset at why would someone attack me, as I’ve done nothing) that they probably stayed ten mins more than they would have if they’d just done their job and treated me as a human being with respect and done what they were paid for.

But I’ve learned people like this choose this. Turn up, (perhaps inadvertently but they don’t seem to notice the pattern of keeping doing it and assume the issue is ‘the other person’) hurt someone then when having created the reaction I don’t know if they then get a kick pretending to be the hero with fake sympathy in the form of pity. Or some really think that’s what kind is because of training and being so used to not listening .

I realised as I often do as a rule eventually that if I get upset each time I talk with someone then it’s something THEY are doing and not me. And that they’ve always turned up when they wanted then gaslighted me making me feel awful. I think they’ve been trained in this communication style as if it’s ‘medical’ and not sales manoeuvring/coercion so think it’s some sort of ‘added therapy’ and not ‘bad psychology’ by insulting people in the first place to cover up realising it’s your push fir having things your way from someone severely disabled that wrecked their day snd made THEM feel incapable when I was the one ready three mins early. They didn’t deserve all that - why did I let them do that?

now my arm to ear is in agony as all the distraction meant the vein that twitches as it sits across the muscle inside my elbow and is right on a nerve was used (even though as the sane person who claims to know me they know that one looks the juiciest but isn’t to be used). From past experience it takes three to four months to calm down before I can not have frozen shoulder type pain all through the blade up neck to ear and and arm that I can’t bend as it’s bruised it feels all through my elbow and up my arm.

I’ve a flared injury as I had to bend down for ten mins to clear up the mess that wouldn’t have happened without the selfishly deciding turning Uk early was better for them.

and they think it’s ‘me’

and yes I’ve now found someone who sounds better and was very blunt on phone which I like when I told them my needs.


this is mentioned by me not because it’s particularly bad but because it’s what people think is ‘nice’. And why I say ‘nice = unkind in disguise’

and because this is the low level sticking the foot out to choose to make life harder rather than give people a chance nonsense that isn’t just daily but almost everything we have to do. As someone who could hide their disability when less ill I know it’s disability bigotry because all this crap has suddenly appeared as an attitude once I couldn’t hide it. I’ve heard others talk of disabled people as having time on their hands which makes no sense given with medical appointments etc we have more before any able bodied person starts.

I thought when I was made more ill it might have been something I’d recover from if I got rest at the time. But almost immediately I was shocked that the attitude from nearly everyone around me was what cab only be equated to bullying . The more I’ll you are the more unkindly and inappropriately you are treated. And it was that which is responsible for instead of getting rest and recovering my window gif slammed on me and my health got plummettted by daily having other peoples liberty-taking making life utterly impossible and rest undermined. It’s terrifying how the more ill I am the more contemptuous or opportunistic people are (covering it with this pseudo weaponising of mental health crap for why the disabled person got worse or seems upset). I feel like I got severe and people were told to put their foot on my neck and increase the pressure. I feel it only accelerate in attitude the iller I get and my hope of ever having a day where my energy threshold vs essential to life are given a chance of being near meeting. It seems people or the system have a problem with ever giving me a fighting chance. That’s heartbreaking to realise.

That I could be moderate and was made almost very severe purely by the bigotry of others attitudes and the opportunism the bps model permits and covers up. It feels those in charge preferred me never to have a chance at life vs being a highly productive but moderate person given adjustments. Each day I wake I feel the acceleration of that incitement in everything I scrabble to do to survive.

I’m naive enough to still be that person inside and ask fir those tiny adjustments as if I was the same person with that same big job and get metaphorical slaps in the face due to this attitude pushed saying people don’t need to do the right thing. And go to bed knowing each day others have chosen to make me that big worse rather than the chance of a days kindness to have a chance of it being rest and being a bit better. All for supposed ‘beliefs’ of certain others who sell belief systems.

it’s the continual attitude pumped into people so this is the best we get from most things we access to. It’s the difference between that taking 1-2days to recover from and two weeks + months for injuries. If the appointment went as it should and others did I could eg get 3tasks done in a week, but others’ behaviour writes off two weeks each time and declines my health. And the misinformation is a big part of permitting this. It’s like a foot in neck because certain voices don’t want to acknowledge the no adjustments = too much fir envelope = decline in heakth over time = smaller envelope. And that it’s not just our heakth that creates disability but priming others around us to either give leeway and treat with respect or play games

And that desperate situation where you sit wondering whether as your health declines further because no one seems to care about keeping doing what they fancy not acknowledging it’s impact means an unsustainable level so your health will keep declining, you’ll lose yiur voice or use of your other arm be impeded and no one has listened yet to your needs when you try and explain then when you do have said voice so it’s terrifying the idea of ending up at others whim.

What our illness needs is for all the offensive waste our energy crap is removed and stops being used as an excuse by those who just don’t want to do what we do need which is: don’t take liberties by turning up when you fancy and when I explain to you the bigger impact that you are taking from me than the gain for you then don’t twist it and tell lies about me. Lies accepted because of bs from people who know nothing about psychology and SHOULD know full well our illness isn’t caused by our thinking.

a ten minute blood test I paid for at the right time. With no other energy or intrusion. THIS WAS my ‘reasonable adjustment’ that I have to pay for - and it’s even ruined by bps too. And the next thing, and the next thing. Because this was small fry and an example of the many things that aren’t particularly terrible as examples but are constant and misinformation is playing a big part in and they all add up to make life impossible unnecessarily

Not another person actually not realising they are being awful people people by just delivery what they fancy which I use the term ‘I’m sorry but you are getting confused and doing misogyny not osychology you do realise’.

the whole thing took out of me three times more energy than it needed to if a single one of those self-interested individuals had cared to hear my words. I told them numerous times about my limitations and just got back ‘ooh that’s sad’ instead of hearing ‘so stop expecting me to magic up being ready when you fancy…… I’m very debilitated’

but if you are only listening for what is useful to you and can’t string actions and consequences together as a person … well it doesn’t help if the info being put out there is being written by people who are also of the same mindset.

what upsets me to digress from this particular module is that I expect the right, knowledgeable people delivering what we DO need (medical follow up long term so there is knowledge of what prognosis is and what helps developed, and probably only regular appointments at moments of truth where some things could be prescribed or letters written at the start of illness and if we start going downhill to stop us getting worse than we need to by having those in good time to sign us off word or sort a deficiency before things get too bad) probably costs a lot less than the total being spent on tosh that is just making our lives unliveable by spreading propaganda.

And wasting our energy gaslighting offending and forcing us to internalise untruths about ourselves tgat do severe harm. Wed have support because there would be straightforward advice what to do (just let us sleep fir two days when we’ve overdone it - fiddling with that because you are angry or think you know better makes it worse and we end up ill for weeks or more disabled forever)

in the 90s and 2000s it used to be a joke about when you went to somewhere fir something straightforward and some intrusive inappropriate psych ‘asked about your relationship with your mother’ or ‘weee you lonely as a child’ and it would give people the creeps. It’s EVERYONE’s worst nightmare to be stuck in this as a plaything fir the strange type who want to do these things fir their own agendas. I say that as someone who does actually have a degree in psychology and so this really is about misuse /abuse of the subject too - proper psychology looks at whether you are doing something harmful and was set up to oversight this sort of tosh where people blunder in claiming any old thing is ok and inappropriate labels and interference can’t be harmful etc. And it’s not cheap!

 

The commissioning group in Suffolk, the MPs CEO's of all three hospitals and anyone else I can think of.

I was asked at a presentation I gave at SNEE (Suffolk and North East Essex) how to make sure the services commissioned, showed that they understood ME and PEM and it is the same with this too I think? Do stakeholders show they understand the lived experience or do they fight against is?

I have been thinking about this because it is difficult for patients who are new to services to understand the complexity of the misinformation and disinformation, about ME and PEM. The verbiage and word salads we have faced over decades is extraordinary. Especially when we look at the evidence from the lived experience. Visible will make that experience visible for all to see, I hope. But as patients only get 6 weeks of therapy and that is who is asked for information regarding services and therefore not a true reflection of the situation. None are properly assessed or tested or given advice on PEM.

Patients can be told a multitude of things, and most will accept this as their truth without question. It is not until their health declines or things do not improve that their real lived truth is understood by them, and they start to work their way through their lived reality. Then they start to ask the right questions. However by this time it is too late for engagement purposes with the ICBs.

This is why both the verbiage used by the lightening process, by untrained CBT therapists and now physician associates, BACME, behaviour or Functional Neurological Disorder advocates is so disruptive to both the partnership between patient and professional and the patients’ health. To change the narrative to fit with the preferred objective; that seems to be of keeping CBT and GET to use in the NHS, protecting the board on NHS England is more than misinformation it is unforgivable. This is a determined effort to confuse and smoke screen patients.

How do we change that? With courage and our truth?

All my letters through the 10 years of my advocacy are on a blog, perhaps not to be read but to keep me safe or to show how right I have been all along, with the lived experience and the harm done to young people.

Yes I would love all the help I can get, as I am very dyslexic and have 101 organisations and places to send these letters and I get lost in it all sometimes. Coming on here is always a way of kicking myself in the right directions
Lists of the most important people to send a letter to is what I need I think?