Open UK BACME tube feeding survey 2025, closes 30th September 2025

[BrightCandle]

I hate this “get out of jail card” every long rambling survey has adopted
“We realise this may be difficult/draining for people to complete, but”
Aka …we can’t be bothered designing something with you in mind, so here’s the usual old nonsense, don’t accuse us of not caring

Also ought to come with a warning that it wont actually change how they behave anyway. They aren't going to do any of the hard things that patients diligently raise in the text section they give them. Its purpose is to waste more of your energy not as a mechanism to address their failures in the questionnaire and to try and straighten the record, there is zero chance they act on it. Their bias is always present in how the questions and answers are framed anyway. We aren't at the stage yet where any of this will be acted on.

 

[bicentennial]

How do BACME dare aspire to produce a clinical guideline for the highly complex art of tubefeeding, as if the Nutrition and Dietetics experts cannot produce their own guideline

If BACME could have enlisted with the experts they would have offered to assist them, not offered to write their guideline for them. They say they hope to engage but I doubt they have a hope in hell.

 

[bicentennial]

I am upset and disgusted to see BACME diving in at the deep end to fasten only on people whose extreme plight was specifically excluded by the ME clinic networks which employ BACME Members

These Members did not protest this, nor campaign for the most vulnerable. They knew which side their bread was buttered and have no shame. Now behold the rush to...

It looks like the only people BACME suddenly, belatedly, commiserate with - are only those who can get BACME Members an extra subsidy

The rest of us have a plan costed by NICE as costing no extra, but needing expert attention to any nutrition and dietetic problems before not after its too late. It means replace some rehab merchants with dietitians, thankyou.

 

[bicentennial]

This survey has nothing to do with implementing the guideline for provision of nutrition and dietetics to help minimise those problems in case of M.E with complications - some people can't obtain meals, and / or suffer partial intestinal failures, which become total intestinal failures if not manageable

Who engineered this fixation to divvy up the cases, the routes and the provisions into 2 categories, more severe and less severe. Now its divvied up the sub-category of people with nutritional and dietary problems

Its obvious enough that more severe cases could not be experimented on with GET, so on the evidence base they were excluded from the GET trials, which was the reason given to exclude them from M.E services - for 20 yrs

And now, mild and moderate cases continue to be the playthings of rehab merchants, with no regard for their nutrition and dietetics when it matters: before it gets unmanageable.

But then once severe, a case must get very severe to pay Bacme for a look-in

 

[Cinders66]

.

It appears that the survey is being done with the Sussex and Kent ME/CFS Society; does not exactly inspire confidence.

Tube Feeding Survey - Sussex & Kent ME/CFS Society

Working with the British Association of Clinicians in ME/CFS (BACME) we are running a survey for those living with Chronic fatigue syndrome/ME or clinicians involved in the care of someone with ME/CFS who has experience of needing tube feeding either currently or in the past. To complete the...

measussex.org.uk

That org have no place here, from when I looked, their local service is one of the "mild-moderate only" clinics and the Sussex groups done very little to improve on that.