UK BACME ME/CFS Guide to Therapy 2025

Jonathan Edwards said:
I guess they think the guff makes sense because their entire training is based on guff.
Click to expand...
Makes sense to me.
Jonathan Edwards said:
But there is also a huge amount of politically correct justification that is clearly a response to a perception that this is what is needed to justify what they do and their salaries
Click to expand...
That’s a good point. The rehab as a human right argument fits this bill.

I also just realised that there is not a single source about the approach. Probably because it doesn’t exist, but that should be a massive res flag for any reader. It’s as little evidence based as it’s possible to be.
 
On page 29, in 'Section 4: Sustaining' ('To continue a focus on the person’s goals and an improved quality of life, whilst accommodating the demands of daily life over time') there's a subsection titled 'Emotional wellbeing', and the first bullet point under it is 'Self-management of grading'. Anyone know what that means? There's no explanation, and no other occurrence of 'grading' in the document.
 
Trish said:
ust to let people know that there is some discussion among forum staff/committee about what action we might take. Some document drafting in very early stages. We'll let you know when we are clearer about what we might do.
Click to expand...

I think a response is needed. Copies should go to the charities and if possible to the DHSC lead for the delivery plan.

My main thoughts would be:

1. No reliable evidence base is provided for recommendations and as far as we know there is none.
2. Many of the sections consist entirely of politically correct platitudes without information content.
3. The biological information given is baseless and confused.
4. The justification for a rehabilitative approach delivered by a team of therapists is not given and as far as we know there is none. As a physician fully accredited in rehabilitation medicine I cannot see anything in the document of value to patients and a lot that appears misleading.
5. The document notes the need for regular long-term review but fails to point out that this is not provided by an interdisciplinary rehabilitation course. It requires long-term physician follow-up.
 
Just ran this by my (MD) wife as she was headed out to a shift at the ER:

Me: Hey babe, remember GET?

Her: *Groans* Uhgh. Yeah?

Me: Well they’re calling it “Pacing up” now.

Her: Lipstick on a pig.

You all hit the nail on its head. And this definitely deserves concerted pushback.

Tell me WHY exercise makes me ill whereas it used to make me strong. Then we can talk. Not before. Not until.
 
What is the laboratory proof of a theoretically devastating dysregulation? My clinical tests are normal are they not?

I have quite enough on my plate with grievous bodily harm done by disease interfering with biochemistry and signal transmission.

My homeostasis is so strong it holds to a pattern albeit a pattern warped and shifted by disease. My homeostasis still optimises its patterning for my survival. It is not optimum, but it is optimal.

And it is my internal niche.

Who dares tell me their informant assumed I must be - maybe - dysregulated. If I was dysregulated I'd be dead. Do not interfere with my homeostasis. The invasion could even dysregulate me.
 
Last edited:
Covidivici said:
Just ran this by my (MD) wife as she was headed out to a shift at the ER:

Me: Hey babe, remember GET?

Her: *Groans* Uhgh. Yeah?

Me: Well they’re calling it “Pacing up” now.

Her: Lipstick on a pig.

You all hit the nail on its head. And this definitely deserves concerted pushback.

Tell me WHY exercise makes me ill whereas it used to make me strong. Then we can talk. Not before. Not until.
Click to expand...
That’s the kind of response we all deserve from our loved ones. She’s a gem!
 
Jonathan Edwards said:
I think a response is needed. Copies should go to the charities and if possible to the DHSC lead for the delivery plan.

My main thoughts would be:

1. No reliable evidence base is provided for recommendations and as far as we know there is none.
2. Many of the sections consist entirely of politically correct platitudes without information content.
3. The biological information given is baseless and confused.
4. The justification for a rehabilitative approach delivered by a team of therapists is not given and as far as we know there is none. As a physician fully accredited in rehabilitation medicine I cannot see anything in the document of value to patients and a lot that appears misleading.
5. The document notes the need for regular long-term review but fails to point out that this is not provided by an interdisciplinary rehabilitation course. It requires long-term physician follow-up.
Click to expand...
Should it also be pointed out that the document never explains the rationale for why doing more would result in an improvement?

There’s not even an underlying theory here because they’ve ditched the deconditioning and unhelpful beliefs model that was the reasoning of pacing up originally. It just says that pacing up will help because BACME thinks it will help.
 
There is so much misrepresentation. I want to tell the local commissioners (clinical, municipal and police) it is mis-selling (so they need to tell their respective Safeguarding Leads).

Pacing does NOT "improve functional capacity", it preserves my capability and precludes unnecessary exertion.

I obviously have no spare capacity for exercise programs, let alone for any interface to tailor exercise, and then evaluate it.

All of my effort-capacity is pre-occupied, as its not even sufficient for essential chores and comms, and so the notion is preposterous, its all been a very big misunderstanding.
 
Jonathan Edwards said:
I think a response is needed. Copies should go to the charities and if possible to the DHSC lead for the delivery plan.

My main thoughts would be:

1. No reliable evidence base is provided for recommendations and as far as we know there is none.
2. Many of the sections consist entirely of politically correct platitudes without information content.
3. The biological information given is baseless and confused.
4. The justification for a rehabilitative approach delivered by a team of therapists is not given and as far as we know there is none. As a physician fully accredited in rehabilitation medicine I cannot see anything in the document of value to patients and a lot that appears misleading.
5. The document notes the need for regular long-term review but fails to point out that this is not provided by an interdisciplinary rehabilitation course. It requires long-term physician follow-up.
Click to expand...
Thank you, that is helpful. Those are the points I would expect to include. I expect we will want to do some consultation with you and others at some stage.
 
Utsikt said:
I wonder if it’s intentional that they write guff or if they actually believe the guff makes sense?

I’ve only encountered this level of guff in business when it’s very clear that the person in charge really does not care about the quality. So it’s often a case of not prioritising it, not a lack of ability per se.
Click to expand...
It’s giving “we brought in a management consultancy to write a report on staff engagement”.
 
My three ha'porth:

If a person with ME/CFS takes up the offer of a personalised physical activity or exercise programme, agree a programme with them that involves the following and review it regularly:
  1. establishing their physical activity baseline at a level that does not worsen their symptoms
  2. initially reducing physical activity to be below their baseline level
  3. maintaining this successfully for a period of time before attempting to increase it
  4. making flexible adjustments to their physical activity (up or down as needed)
  5. to help them gradually improve their physical abilities while staying within their energy limits
  6. recognising a flare-up or relapse early and outlining how to manage it.

    [Original bullet points replaced with numbers by me]
Click to expand...

1. Authors appear unaware that cognitive activity and sensory load contribute as much to symptom worsening as physical activity.
2. Authors do not understand that this is unfeasible, as ordinary daily living tasks exceed the baseline.
3. See 2.
4. See 2.
5. Authors do not provide any evidence this works.
6. Authors appear unaware that people with ME/CFS cannot know whether their constantly shifting PEM threshold has been crossed until after the event.
 
You must log in or register to reply here.
Back
Top Bottom