M.E. / CFS assessment on the NHS - Epworth Sleepiness Scale? I'm fatigued, but not sleepy...

[Replenished]

After struggling for many years with health issues, fatigue etc and finding no answers I've been referred to the M.E. / CFS clinic and have received some forms to complete and return before my assessment.

One of the pages being the 'Epworth Sleepiness Scale'. Now, I want to be honest on the forms and have been for all of the questions thus far but I'm concerned this page is somehow trying to catch me out and cause issues getting a diagnosis. For those that aren't familiar with these questions is asks for you to mark your chances of falling asleep 'dozing' while doing certain activities, such as Sitting and reading, Watching TV, Sitting inactive in a public place like a theatre, as a passenger in a car for an hour, lying down to rest in the afternoon to rest when circumstances permit, sitting and talking to some......you get the message.

My chances of dozing off in these scenarios are almost zero. Not because i'm not fatigued, i'm often utterly wiped out, but i'm usually wired, or slightly anxious, frequently urinating or feeling like crap. The only place I can sleep is in bed, in the right conditions.

Has anyone else done this questionnaire and am I going to cause myself issues by basically saying I wouldn't fall asleep in these scenarios?

 

[BrightCandle]

In the NHS its often used to assess Obstructive sleep apnea. I can't tell you if that is their intent here but they may be trying to rule in or out OSA as a possible explaination. A lot of places still aren't assessing ME/CFS properly around the world and they consider it a diagnosis of absence of a list of alternate explanations and questionnaires, blood and other diagnostic tests will be used to determine if there is some other explanation.

I don't think its a red flag. My red flag with an ME/CFS initial intake was a Psychologist asking if I had a happy childhood and if there was any trauma and when I said all was well she just assumed I was lying. No tests just stupid psychologists. If you get to that stage then its definitely a red flag as is any form of exercise or psychological intervention to cure you such as CBT, those are the red flags.

 

[Wishful]

I too don't sleep unless it's my usual bedtime. I pretty much can't fall asleep during the daytime unless I'm really ill (viral infection or whatever). I think that's just how some people are, whether they have ME or not, so it certainly shouldn't be a pass/fail question for a diagnosis.

If there's a way to include it in the questionnaire, honestly say 'no' to those questions and also clearly state that it's the same that it was pre-ME. I haven't read anything suggesting that ME necessarily makes us sleepier.

 

[Rufous McKinney]

sometimes and mostly daytime I'm incredibly sleepy. but I Don' think of this problem as being "sleepy".

I wonder why I have so much trouble outside? If I can get down the stairs and just be out side for a while, most of the time I entirely wish to collapse, pass out, if I sit down someplace out there, I can't seem to sit up, I"m on a public bench, what if somebody sees me, other forms of embarrassment....stagger back, try not to look sick, go back up the stairs.

 

[Wishful]

Has anyone else done this questionnaire and am I going to cause myself issues by basically saying I wouldn't fall asleep in these scenarios?

Unless you know what their responses are to the answers, honesty is probably the best policy. It might be that by saying 'yes' to those things, they'll send you to a sleep disorder specialist first, to check whether you have a sleep disorder that 'makes you feel constantly tired'. If they find that you don't have a sleep disorder, then the diagnosis of ME would be stronger.

 

[keepswimming]

I did the same survey for my NHS clinic. Like you I scored low, my answer was zero to most of the questions. My therapist said that was to be expected, as it is fatigue I suffer with, not sleepiness. She gave me a CFS/ME diagnosis.