United Kingdom: Derbyshire Chronic Fatigue Syndrome (CFS/ME) Service

My Local Clinic still haven't updated their website.

https://twitter.com/user/status/1507088464092844038

 

Chronic Fatigue Syndrome (CFS/ME)
The Derbyshire Chronic Fatigue Syndrome (CFS/ME) Service is based within Specialist Rehabilitation at Florence Nightingale Community Hospital.
The team consists of occupational therapists, physiotherapists, a cognitive behavioural psychotherapist and consultants in rehabilitation medicine.

Patients are seen by the most appropriate professional to meet their needs. All staff are trained in the field of CFS/ME. The CFS/ME pathway includes specialist assessment, therapy interventions and self-management advice for adults (aged 16 and above) who have been diagnosed with chronic fatigue syndrome/ME.

https://www.uhdb.nhs.uk/service-chronic-fatigue-syndrome

patient leaflet link https://www.uhdb.nhs.uk/download.cfm?doc=docm93jijm4n12002.pdf&ver=43912

Feeling low in energy A self-help guide to managing low energy levels (CFS/ME)

 

I flagged this in March

https://twitter.com/user/status/1507088464092844038

 

Peter White was aware

https://twitter.com/user/status/1507096745209126915

 

I also messaged the ME Association in April letting them know it was still up.

 

job ad

https://www.nhsjobs.com/job/UK/Derb...y/Physiotherapy_Occupational_Therapy-v5092684

 

Some stuff from their leaflets... They don't look like they've changed


Causes
Finally, once the person has started experiencing the symptoms, there may be other factors that worsen the symptoms, such as over-exertion or stress, poor sleep or diet, low mood and reduced fitness levels. These are known as ‘perpetuating factors’. These can often become vicious cycles that develop as a result of the fatigue, but then make these symptoms worse. The model is illustrated below:

Possible perpetuating factors
Over and/or under exertion
Boom and bust activity pattern
Stress
Disturbed sleep
Low mood
Anxiety
Poor diet
Guilt
Denial

Incremental pacing
This initially involves balancing activity and rest to enable people to participate in activities whilst keeping their symptoms at a manageable level. The aim is then to gradually increase participation in activity in a planned way.

Graded activity/exercise
Physical activity is important for general health, reducing fatigue and pain, increasing muscle strength, improving concentration and helping sleep. A programme of physical activity or exercise with manageable levels is agreed where appropriate to each individual.

 

It’s so patronising isn’t it? Is there one person alive who doesn’t instinctively and educationally know that movements of different variety’s at different speeds or intensities feel good and are necessary to living, its close to breathing. Unless you’re sick.

 

Denial, yeah okay. I mean it is a bit hard to accept that a few psycho/is all it takes to make sure a whole world of people have our lives totally destroyed. But what have we got to feel guilt about?

 

I find it unacceptable and unforgivable. I agree with others elsewhere talking about being nice to sides that basically say they don't care on the very 'claimed reason for being' point who think snaffling off the naff narcissistic term 'it's a debate' like 'it's a puppet' is funny. And I don't think these people now deserve any of the sympathy or 'good intentions' whilst looking the other way so they don't see the harm they cause - it's time they got used to the grown-up conversations that happen in other workplaces where someone is allowed to say not good enough and stop thinking of yourself it isn't about you.

I am intrigued however whether the insistence on carrying on with propaganda and 'treatment' that is harmful in every way particularly psychologically is down to some form of contract where the person doing the course is 'being paid to deliver x until y date' by some ICB or whatever - which flags a major issue and fallacy in the NHS where you can't even switch off the harmful stuff because otherwise the person feels vulnerable in losing their job by not completing JD (if internal) or company has a breach of contract (external) and the last thing anyone is thinking of is the harmed patients in the middle.

I'm not naive to think there might be individuals through the chain who have their own ideological stuff and are just being pig-headed, whether it is the on-the-ground people running the service and seeing patients or those commissioning it or likely both

BUT I'd like to have a survey or something that lists ALL the loci of issues. Some of which will be individual to ME some of which aren't - it's ridiculous funding claiming to be 'in our name' is going on stuff that continues to wreck people's worlds. And I wonder how many are caught in the riptide and how many are taking advantage because they don't want to change.

I can't believe we are 2yrs on and this propaganda that is leading to people being harmed and abandoned and dystopianly having nutters around them calling them nutters and not letting them speak or live truth about their own bodies - which is the most digusting harmful thing one could do really - is still up. Disgustingly and irresponsibly weaponising the term mental health just for said power and control they don't deserve and to do harm, which is the most anti-mental health and disrespecful to those who do have mental health and work in proper areas of it professionaly and properly I can think of. And yes we do clearly need to distinguish in that sector the baddies from those who are there for the right reasons.

I find it utterly shameful those playing a part in this have the gall to use the term 'mental health' to cover their doing harm to both health and mental health and any health in any way, it surely must be ditched as a failure of a term in how it has been used in the UK health sysem because under the way leadership allowed it to be used and applied ambiguously it seems to be applied to those harming it being allowed to claim they are workers in it - what bigger outrage and failure of a top of and oversight of and intelligence of a sector can you have than that. It seems to just be a fop and a term used for power and approx nod to department or excuse of an 'add-on' across depts because people did a 2 day course in manipulative communication styles (which again isn't about patient mental health but weaponising that term as an excuse to get people to use techniques which are all about others getting what they want/need out of an encounter over the patient needs) - whether said people are doing good for the patient or just this awfulness. And the sector doesn't seem to care for a clean up by itself given the structure, goodness knows what we did to get landed with them, but tbf I'm just outraged these hangers-on people get to make their cosy living out of this at all, nevermind entitle themselves to a voice over those who are more intelligent,less ignorant and care about outcomes ie are responsible individuals.

So yes I'm one of the few who now thinks we need to stop fopping to their rhetorical game-playing with all of this and talk to the harm these unprofessional use psych as a buzzword to cast aspersion staff cause and take their toy away from them - it's just the worst childish misogyny they are doing with this and they are doign it because noone is calling out 'bullying and rumour-mongering isn't therapy for anyone', and yes its the worst kind of bullying to get an ill person in and bombard them telling them they are in denial and what their personality is - sicko people. It couldn't be more the opposite of 'harm free' and 'good intentions' if it tried. And yes its laziness in all excuses at the huge expense of others who literally have exponentially less energy, again something I find inexcusable and indicative of a lack of perspective.

 

posting this again because previous post wasn't clear.
I thought that the LC patients were being 'treated' at the 'fatigue clinic'?

As I said before I can't find anymore info on the review or the workshops it mentions.

 

why is the picture of a little old lady in a w/chair?

 

Probably because she looks too happy to really need one, don’t you know these days all the self-respecting disabled people are taking themselves off to Switzerland never to return. /s


Or you know because since UK gov raised the pension age yet again, there is the little matter of totally foreseen consequences. Coinciding with the fact that everyone has heard about long Covid. Wouldn’t want the elderly getting any ideas about reducing their very decent chances of starving or freezing to death in some of if not the, absolute pinnacle of top tier gold medal level, dampest of housing available worldwide. So better make sure they don’t imagine themselves disabled enough for an application for disability benefits. Nip it in the bud.

Probably though they have just remembered how successful a PR coup- for a pre determined strategy of rampant infection infections-saying over and over how any negative consequences will be confined to the old was. They’re just dusting it down, as previous levels begin to begin to wane.