NHS Royal Devon University Healthcare ME/CFS service

[Sly Saint]

updated Feb 9 2023

Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)
ME/CFS, is a serious, complex, chronic multi-system illness that can profoundly affect the lives of people who develop it.

ME/CFS affects patients in a number of different ways. It can involve a wide range of symptoms that include overwhelming fatigue, malaise, headaches, sleep disturbances, muscle and joint pains.


Symptoms also often include cognitive difficulties, such as impaired concentration and problems with word finding. Studies have shown that the condition affects many body systems, particularly the immune, endocrine, and nervous system.


The pattern and intensity of symptoms vary from person to person and symptoms are unpredictable in their nature.

All the leaflets (all using CFS/ME) appear to have been modified since the new guidelines although the content looks pretty much as before.

eg. Boom and Bust

This diary shows a pattern of BOOM & BUST. The start of the week shows long bouts of HIGH activity, followed by LOW activity and SLEEP. As the week progresses “payback” sets in and the person is less and less able to carry out activities, until at the weekend they have to SLEEP most of the time. There is no sleep pattern, getting up time is getting later and later. Daytime sleep maybe the cause of this activity pattern and RESTLESS SLEEP. If this pattern continues symptoms are likely to worsen and the condition will be prolonged. This person can use the total amount of HIGH activity achieved (28 hours to set the baseline for pacing of 4 hours of HIGH activity per day (see PACED Activity Diary).

I don't recognise this pattern, particularly with relation to sleep. For me the worsening in sleep quality/inability to sleep is as a direct result of over-exertion and not because of sleeping during the day.

I would also question why they are saying that this is the cause that the 'condition will be prolonged'.

https://www.royaldevon.nhs.uk/services/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs/

 

[rvallee]

updated Feb 9 2023



All the leaflets (all using CFS/ME) appear to have been modified since the new guidelines although the content looks pretty much as before.

eg. Boom and Bust


I don't recognise this pattern, particularly with relation to sleep. For me the worsening in sleep quality/inability to sleep is as a direct result of over-exertion and not because of sleeping during the day.

I would also question why they are saying that this is the cause that the 'condition will be prolonged'.

https://www.royaldevon.nhs.uk/services/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs/

They seem to confuse fatigue for somnolence here. Typical.

 

[Lou B Lou]

So any mention of PEM?

 

[Peter T]

If my memory is correct Devon and Cornwall are proactive in relation to IAPT and MUS, so I would not have high expectations of their ME services.

Is this one for the MEA to chase up on?

 

[DokaGirl]

The use of the term "Boom and Bust" to describe my activity level, and dare I say many other PwME, is ridiculous.

It makes members of our community sound silly, as if we have no insight into our disease, no wisdom, lived experience, or self control. As if we need help from some misguided practitioner.

 

[Lou B Lou]

'Boom and bust' places the cause of continuing illness in the behavior of the patient.

 

[Shadrach Loom]

There’s never a sodding boom, anyway. It’s a ridiculous way of describing a phone call, or a brief visit from a friend, or loading a dishwasher. What do they think we are doing?

 

[Simbindi]

So they state on their home page -

ME/CFS, is a serious, complex, chronic multi-system illness that can profoundly affect the lives of people who develop it.

ME/CFS affects patients in a number of different ways. It can involve a wide range of symptoms that include overwhelming fatigue, malaise, headaches, sleep disturbances, muscle and joint pains.

Symptoms also often include cognitive difficulties, such as impaired concentration and problems with word finding. Studies have shown that the condition affects many body systems, particularly the immune, endocrine, and nervous system.

The pattern and intensity of symptoms vary from person to person and symptoms are unpredictable in their nature.

But everything e1se in their patient information suggests ME/CFS is mere1y a stress response and can be managed by p1anning and 'budgeting' activities in the same way one might budget a month1y income.

The 'team' seems to consist of just occupationa1 therapists. No home visits, so c1ear1y have no experience of severe ME (and probab1y not moderate either).

There is a serious aspect to this kind of service, beyond being use1ess to the ME patients in the area. That is, they cannot provide any meaningfu1 input to those severe patients who have to be hospita1ised. The Roya1 Devon service was the one that Maeve O'Nei11 was under and it was very distressing, as a PWME, to read what happened to her under their 'care' (as we11 as heartbreaking of course). It was especia11y horrifying to rea1ise how the consu1tants went against the specia1ist advice of Dr Weir (as reported by David Tu11er).

The other thing I don't understand about this service, is that isn't this the NHS Foundation Dr Strain works with as an 'advisor'? How can they continue to be so ignorant about ME/CFS?

https://www.actionforme.org.uk/news/meet-our-new-medical-advisor,-dr-david-strain/

 

[DokaGirl]

There’s never a sodding boom, anyway. It’s a ridiculous way of describing a phone call, or a brief visit from a friend, or loading a dishwasher. What do they think we are doing?

Exactly, there "ain't no boom!"

 

[Andy]

See also UK: Royal Devon University Healthcare Trust: Planned and unplanned admission process for severe or very severe adult ME patients - clinical guidance