ME severity scales - discussion

Over the years my incapacities have varied in type and severity. There is no simple linear scale. Something based on points, and a very long list of possible issues, including in very severe and very long term patients, might be required.

 

Queens hospital UK which used to have an inpatient ward for the severe, used to use grades. I think that’s better as stage perhaps suggests one way progression. I can’t believe that 25 years on we still have and use UK severity scales that don’t do proper justice to either the mild or the severe (by blurring it in with very severe and making moderate a ridiculously large group that covers all until you become too incapacitated to do anything for yourself). The nhs wording is the very poor NICE guidelines criteria dumbed down. The Queens ward admitted people who were grade 3 and 4, which correlates with with being severe and very severe. I was on there a few days before I discharge myself but from what I Recall the people who were classed as grade 3, severely affected were sometimes sitting out in chairs, chatting for an hour going down to Chapel and I think they were dressing themselves et cetera so the description in the Nice guidelines was out of date, even in the early 2000s.

 

agree completely

PS:
where is Queens hospital just so I know I’m thinking of the right one?

I’m assuming it was very different people running that ward to who are there today as a larger department?

 

Queens was the m,e service in a hospital in Essex run by Prof L Findlay. It ran from 1992? till about 2010. It was, I think that set up by Findlay & Dr Dowsett & Prof Chaudhuri ended up there but afaik m.e service cuts had turned his role into a diagnostic only one and cruelly he didn’t seem to be allowed to assist in very severe cases, even if in his hospital or region or something. I don’t know if that’s still its form today. Edit It’s an example of how severe ME medical care and provision and expertise in the NHS has actually gotten worse over time, even if general “belief”, from the hostile EBM medical profession, has improved

 

Following up on this I decided to trace the evolution of the severity definitions used in official UK literature because I do not feel they are accurate or a true reflection

1) Findlay Cox

Cox DL, Findley LJ. Management of chronic fatigue syndrome in an inpatient setting: presentation of an approach and perceived outcome. Br J Occup Ther
1998; 61: 405-09.

The origin is this paper by Prof Leslie findlay & his chief OT Diane cox in the late 1990s. It strangely. distinguishes severe ME capabilities from the widely accepted incapacity of very severe m.e by the ability to maybe wash the face or clean teeth, which is a tiny grade up and many bedbound perform these so i’m not sure it was ever A well -considered definition. in my reading it is sketchy, and perhaps uses lowest common denominator tasks, rather than presenting the spectrum of capability

1. The patients in the severe category will be able to carry out minimal daily tasks, that is, face washing and cleaning teeth, have severe cognitive difficulties such as retention of information, short-term memory difficulties and word-find-ing difficulties, and be wheelchair dependent for mobility.
2. The patients in the very severe category will be unable to mobilise or carry out any daily task for themselves and be bedridden the majority of the time.

As I’ve said elsewhere, I was an inpatient briefly on the ward where the two gradations of severe m.e patients were, under Professor Findlay. From what I recall, I was the only person on the ward who couldn’t feed myself, there were only two of us very severe, the other four who were severe were varying degrees of sitting out in a chair sometimes, conversing for ages , even 1 walking themselves to hospital chapel & going to the TV room and I think they were largely self caring, so there was a huge distinction between their capabilities and my capabilities and this isn’t reflected at all in this paper definition and subsequent incarnations….


2) This Findley/ Cox severity definition was put in the 2002 chief medical officers report, possibly because it might have been one of the few in existence at the time, was quite innovative in its use of grades, Findley was a friend of dr S or because Prof. Findley at the time was considered one of the few experts. The paper in its entirety was also very reverential to Wesselys work (& CBT / rehab model & the 1996 RCGP guidance) & Simon Wessely was the establishment expert of choice at the time. The word “only” was added to limit task capability to the most minimal & the parameters of freedom, rarely leave the house, was added.

"Severe - Will be able to carry out minimal daily tasks only, face washing, cleaning teeth, have severe cognitive difficulties and be wheelchair dependent for mobility. These people are often unable to leave the house except on rare occasions with severe prolonged after-effect from effort."

"Very severe - Will be unable to mobilise or carry out any daily tasks for themselves and are in bed for the majority of the time. These people are often unable to tolerate any noise, and are generally extremely sensitive to light."


3) the 2007 NICE guidelines did away with dividing severe & very severe m,e & blurs the severe categories into one, retaining the descriptions of each used before, so severe m.e becomes unable to do anything OR maybe a minimal task like a face wash ,

• People with severe CFS/ME are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.

4) the 2021 NICE guidelines reinstate 2 severe groups but apply the early very severe description of unable to do anything as a sweeping initial statement to severe m.e & portrays the little it says the severe “may” do , as possible exceptions to this. It adds that the severe may spend most of their time in bed and are attributed with sensitivies.
The emphasis has therefore subtely changed over time, the Findley paper positively states the severe *will be able to*/do minimal tasks listed ….. whereas the current definition starkly states they will be unable to do anything for themselves except maybe … and then list the same minimal tasks and adds the emphasis of "only". The examples of activity in all cases for severe ME are imo Too limited. The very severe are now in bed all the time and it’s added that some may not swallow, like me, although it's not said this is rare and a tiny minority.


Severe ME/CFS

People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.

Very severe ME/CFS

People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.



People who are not severe may not think any of this matters, but I think it matters as a lot. Firstly, in order to be truthful and accurate and also to remove an illogical situation of severe and very severe m.e capabilities being distinguished by minute tasks and the moderate definition is covering the range of physical capabilities from being able to wash a bit more than your face to having to give up your job part-time. Of course we can make up with that by saying people are between moderate and severe but this Isn't possible in surveys etc and we have seen in the count M.E in survey , which used the NICE guidelines definition, that the % severe was 17% and this will possibly inform service provision and research funding. A father of a severe young man is now trying to survey numbers in Wales to improve services & the Nice definition is again being used.


In my view , we need severe m.e lived experience ascertained from actual surveys of people who are nearly 100% housebound and low function and worse separated from the moderate, who are forced to be at home a lot but have a life outside of the home i.e. are not invisible and are not so low function and can self-care et cetera. Surveys would assess is it true that all people who have severe me “can barely move” & it could well lead to a revision of current definitions.. The benefit would be a full representation of the range of severe ME which I believe to be far wider than the narrow range that has been chosen. I believe some housebound can do quite a lot of self care/ ADLs and are far from total invalids. I would expect an increase in the numbers counted as severely affected and therefore more attention & care given to this "25% minority"

No charity has been willing to discuss these severity definitions with me on Facebook, although they are happy to discuss the language around mild m.e,.. Bizarrely to me, the 25% group use the NICE guidelines definition too, even though it is difficult to correspond minimal capabilities with the housebound definition & the lived experiences of people who have previously used their severe term.

edited to add the words “could well “ &=sentences “because I do not feel they are accurate or a true reflection” “which I believe to be far wider than the narrow range that has been chosen. I believe some housebound can do quite a lot of self care and are far from invalids.”

 

I’ve found defintions of very severe to be especially consequential. Because they sort of define how bad the illness can get. Which means officially, anything worse than described under the definition of very severe is not acknowledged, accepted, recognised, there isn’t even a pretense of caring for it.

 

I can't even figure out what I think I belong on my own interpretation of scales. I think I have it figured then read someone's post and they call themselves something else but are describing something I deal with.

 

I think what’s listed are core features in terms of mangement. Personally spasticity is a big issue for me that’s not really covered in any literature at all, likewise central sleep apnea which has made it difficult to tolerate any meds. I’ve had several friends/ acquaintances in extreme pain, which has required medical management, so I’m surprised that isn’t mentioned

 

I don’t mean in terms of symptoms, but in terms of ability (disability).

Like if you describe very severe as:

Mostly bedridden, can only sit up for short periods, must take breaks between speaking, chewing may be difficult.

This definition implies:
* They can leave their bed for short periods
* They can sit up for short periods
* They can speak a bit
etc.

For some people, none of these are true. But everyone they see will assume they can do those things, because that’s how bad it can get according to the official definitions, and if they can’t do those things, people will get extra pushy and sceptical.

 

It’s almost like they definition of very severe should come with a warning to not assume they are able to do anything.