UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

Not a clue .

 

I mean, first of all, the thing to do would be set out descriptors 1-5 then just ask you to rate the following 90ish activities, no?

I’m not a scientist but I did a bit of marketing and in question design terms, this is poor

 

I hope the list of activities includes filling in pointless questionnaires.

 

using an incomplete list masquerading as a choice of them using a list to replace asking people directly what % of what normal people have energy and choice-wise in a day. Yes indeed.

Being able to bear in mind whether these are questions people will be qualified to answer. ie could even healthy people interpret what they think they are getting at.
Zero.

Is there a negative score to then note the fact you are indeed supposed to take into consideration the disability and accessibility of your chosen medium and question?

Wording, poor.

Clearly there is some exemption in question design basic standards for this area.

What the heck do they think they are doing - I mean the utter stupidity masquerading as arrogance to think they can instead of 'measuring the gap' which people are indeed qualified to answer, and they can provide specificity for to enable accuracy in the form of a disability scale

It is like someone guessing someone else's expenditure when they don't deal with the day to day bills and don't ask the members of their household how much eg a female haircut costs vs their buzzcut down the road. So just thinking off the top of their head what people might have and being utterly incomplete and forgetting all the incidental 'life taxes' like parking, insurance, having to buy ant killer, new uniforms, repair x y or z because you couldn't buy expensive and so house and car have things that wear out or when a saucepan breaks you need a new one because you don't have 25 or a relative who has too many anyway. And believing you've got 'disposible income' to predict whether people can buy a holiday.

Instead of asking people whether they have £500 left over at the end of the month. Which one do they think healthy people will answer more accurately. SO why are you doing the other thing?

They do realise they are talking about a condition where just answering the phone to someone who has a crisis or having to call some business about something that should be straightforward but they choose to make it a 2hr attrition war waiting in a phone queue and doing 'security info' 25 times could be someone done for the week?

 

they don't even seem to have noticed the possibility of increased activities and duties related to actually being ill. Like ringing for prescriptions or medical appointments, sorting and getting results of tests, follow-up and booking new appointments and scheduling how on earth to get somewhere or rearrange to a different format that isn't readily available then writing notes. Booking and attending the various reviews.

 

Every good research should know that you begin with exploratory focus groups - or in this case adapted so they could have taken in the first-hand information of those too ill to perhaps do that format - in order to inform that type of survey and if it was going to work.

So I don't think there is any excuse for this. Skip a step and miss by a mile - that's why the professionals, and even those who are greener, bother to take the time, energy and delay of doing said first step.

 

I thought one of the other two questionnaire was about “what is vigorous activity for you and there was debate about how that was subjective and not a good way to measure. Now we have to choose between whether we “can, can with adaptations, avoid, can’t or erm really can’t” swim or play golf?

 

Is it the Sussex group?!

 

Luckily a workable clinical review tool exists already. Typical question I'm asked: "Is there anything you've been struggling with more than usual, or have you been a bit better?"

I can't for the life of me see what's wrong with transferring this approach—asking a simple question that both acknowledges the challenges the person faces, and allows them to focus on what they feel is most important—from other specialities to ME/CFS clinics.

 

Agree, there is a difference between getting people qualified to and interested in speaking to the 'overall' vs just getting a few people in to say limited feedback on something overall designed to go a certain way. To what extent was that group, their qualification to understand research and the information and aims given to them enabling real input.

In this instance I wonder whether they got the right people in early enough when they were thinking of the overall approach. Or.. if they had thought through where this approach would end up in number of questions and possible completeness (if you aren't analysing the gap but trying to be somewhat complete in activities/exertions one could experience) when they asked them.

I'm not saying looking into this condition is going to be easy but for that reason there should be anticipated that there will need to be different rounds and different types of feedback to what you might have eg for a bum knee that has had an op with quite simple after measures of 'how that went'.

The email from the MEA talks about PROMS as if they have been commonly used for other chronic illnesses but here it seems the development of these tools was primarily based on the post-op type thing?

 

They put together a Patient group from applications on the MEA website

 

I wish we could have seen the presentation toBACME that Tyson and Gladwell gave the other day

 

Apologies. The Sussex group was slightly sarcastic shorthand, as that group is known to be very supportive of GET/CBT and the researchers involved in the BPS position and their involvement would allow the "patient participation" box to be ticked while only asking a supportive patient group sample, since we were, apparently obstructive.

I wonder what the MEA's selection criteria for involvement were...

 

If they wanted to recruit people who'd recently been treated by a clinic, it might produce a group that can give insightful feedback on the current setup, but is short on experience of long term ME management and knowledge of current and historic research issues.

 

Presumably they would have been vetted in order that they wouldn't indulge in "hysterical projection, catastrophising, conspiracy theories, overt hostility and insults", or constructive criticism as most people call it.

 

"Yes, but with adaptations (eg aids and equipment, help from another person, more slowly than a healthy person, or using methods that involve less effort) AND/OR I limit or alter other activities to achieve it AND/OR I limit how often I do it to enable me to do higher priority activities."

This option particularly bothers me. It draws in too many variables (although nothing about repeatability or reliability or harms). It's the option that will be chosen most often for the unavoidable activities of daily living. I think it will be used to draw the conclusion that "these people are a bit restricted but with appropriate adaptations they can do whatever healthy people do". It fits very well with the messaging from the DWP about grab rails rather than an income.