ESA50 Example Answers for M.E. / Fibro

A full guide to filling in the ESA50 (big ESA questionnaire) is here. This post is for people who have M.E., Fibro, or similar conditions, to give you some extra gentle prods in the right direction. So, use the other guide, but as you reach each section, consider whether any of the phrases / questions below apply to you. Do not forget to enter information about any other conditions you have, too! (For example, because M.E. is my main problem, I nearly always forget to put information about my back problems on forms).

If you can suggest any additional sentences for any of the questions on the form, please do not hesitate to contact us through the group. Please remember that these are in reference to M.E. and Fibro specifically, though.

Beware any benefit cheats - I am throwing wild cards into these suggestions, which will be blazingly obvious to any trained medical professional. If you're a genuine claimant you need not worry about the wildcards, as you will only be using sentences that honestly apply to yourself.

On Page 3, there is a box that says "Tell us about any help you would need if you have to go for a face-to-face assessment."

• I am unable to use public transport.
• I would require an assessment on the ground floor, or a building with a lift, because I cannot use stairs.
• I would require parking at the front of the assessment centre, as I cannot walk further than 50 metres.
• I would require a ramp at the entrance of the building, as I use a wheelchair.
• I would require seating at reception, as I cannot remain standing, for the queue to register.
• Ideally I would wait in a darkened room as I am very sensitive to light, but if this is unavailable I will cover my head / wear sunglasses in the centre.
• Ideally I wait in a silent room as I am very sensitive to sound, but if this is unavailable I will wear earplugs / ear defenders. Please bring this to the attention of the assessor, as I may not hear him / her when they call me for my assessment.
• I require seats with no arms as I need to raise my legs from the floor.
• I require seats with no arms as I need to lie down while I await assessment.

Question 1: Moving Around & Using Steps

• Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome affects me when I'm walking, so I am unable to walk many steps without needing to sit / lie down. (If OI does not affect your walking, do not use it in this section).
• Post Exertional Malaise affects me very quickly, so I am unable to walk many steps without needing to pause to rest.
• It is too painful, due to pain in the muscles of my legs, caused by M.E. / Fibro, for me to walk more than 50 metres.
• It is too painful, due to pain in the muscles of my legs, caused by M.E. / Fibro, for me to raise my legs to use steps.
• I cannot walk any distance unaided due to dizziness / vertigo.
• I cannot mount any steps unaided, due to dizziness / vertigo.
• My balance is too poor to walk 50 metres unaided.
• My balance is too poor to walk up any steps unaided.
• I cannot walk due to weakness in my legs.
• I cannot use steps due to weakness in my legs.
• I usually / often / sometimes crawl up the stairs in my house.
• I use a stick to walk with, because it helps reduce pain.
• I use a stick to walk with, because it helps with my balance.
• I use a stick that has a seat on it, so that I can avoid passing out because of Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.

Incidentally, many people with M.E. and Fibro do not know that they have Orthostatic Intolerance. Do you find that when you remain in a stationary position (standing, some people suffer it when sitting with feet down, too) that you become light headed, slightly nauseous, kind of sweaty palms, and just generally don't feel right? Is it alleviated by raising your legs? If yes, then you need to be tested for it (most doctor's aren't familiar with it, so it's useful to print out information about it for them). For now though, on your ESA50 refer to it as becoming light headed or feeling like you will pass out. (The reason I keep using three names for it is because different specialists seem to know it by different names. The last one, "Postural Tachycardia Syndrome" isn't the same as the others, but they are part of Postural Tachycardia Syndrome). Complicated, isn't it!

Likewise, in case you're unaware of what Post Exertional Malaise is: It literally means "illness after activity". Illness usually being exhaustion or extreme fatigue, in this case. People with M.E. generally have to be very careful how much activity they undertake, as they will pay for it later. We pace what we do, because we have limited energy resources. That nasty payback later (which varies a little from patient to patient) is the Post Exertional Malaise.

If you're unfamiliar with both of the things I've just described, I highly recommend you do some reading about M.E., starting with the symptom section of the International Consensus Criteria for M.E..

Question 2: Standing & Sitting

• I am unable to remain in a stationary standing position for more than ## minutes, due to Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.
• Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome last caused me to pass out from a standing position on ##/##/####.
• I struggle badly from Post Exertional Malaise. As such I am frequently so exhausted that I cannot sit up at all, let alone move from one seat to another.
• I am unable to remain in a stationary standing position due to lack of strength in my legs.
• I am unable to remain in a stationary standing position due to dizziness / vertigo causing me to fall.
• I am unable to remain in an upright seated position due to weakness.
• I am unable to move from one seat to another without help, due to weakness in my arms and legs. I cannot lift my own body.
• I am unable to remain in a seated upright position without my legs raised in front of me, due to Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.
• I am unable to remain in any position, whether seated or standing, for more than ## minutes due to discomfort.
• I use a stick with attached seat because I am unable to remain in a standing position due to Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.

Question 3: Reaching

• I am unable to raise my arms above my head due to Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.
•  I am unable to raise my arms as if to a upper shirt pocket, due to Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.
• I am unable to raise my arms above my head due to weakness.
• I am unable to raise my arms as if to an upper shirt pocket, due to weakness.
• I am unable to raise my arms above my head due to pain in the muscles.
• I am unable to raise my arms as if to an upper shirt pocket, due to pain in the muscles.
• I am unable to raise my arms above my head as it causes / exacerbates my dizziness / vertigo.
• I suffer badly from Post Exertional Malaise. As such my arms often feel too heavy to lift above my head.
• I suffer badly from Post Exertional Malaise. As such my arms often feel too heavy to lift them as if to a shift pocket.

Question 4: Picking up & Moving Things

• I am unable to pick up either a half litre or a litre carton due to extreme pain and / or stiffness in my hands.
• I am unable to pick up either a half litre or a litre carton due to disorientation caused by extreme fatigue.
• I am unable to pick up a large object such as an empty box, because I cannot hold my arms out to the side due to pain in the muscles.
• I am unable to pick up a large object such as an empty box, because I cannot hold my arms out to the side due to extreme fatigue making them feel very heavy.
• I am unable to pick up a large object such as an empty box, because I cannot hold my arms out to the side due to weakness.
• I am unable to pick up a large object such as an empty box, because I cannot hold my arms out to the side due to pain in the muscles.
• I am unable to pick up and move an object from one place to another due to a lack of co-ordination caused by extreme fatigue.
• I cannot bend to pick up a large object such as a box, from the floor, due to pain in my legs.
• I cannot bend to pick up a large object such as a box, from the floor, due to vertigo / dizziness.

Question 5:  Manual Dexterity (Using Your Hands)

• I cannot *pick example from form* due to pain and / or stiffness in the muscles of my hands.
• The ability to use my hands is severely affected when I am exhausted, because I become very unco-ordinated.

Question 6: Communicating With People

• I am frequently so exhausted that my speech becomes very slurred, and I cannot formulate a coherent sentence (with written, typed, or spoken) due to struggling to find the required words.
• When I'm extremely fatigued I am unable communicate sensibly in a verbal manner.
• When I'm extremely fatigued I am unable to communicate sensibly in writing.
• When I'm extremely fatigued I am unable to communicate sensibly by typing.
• I am often / frequently / never able to communicate by typing due to severe pain in my hands.
• I am often / frequently / never able to write due to severe pain in my hands.
• I am often / frequently / never able to speak due to severe pain caused by TMJ (Temporomandibular Joint Disorder).

Question 7: Other People Communicating With You

• I frequently struggle to understand what people are saying to me due because of tinnitus.
• I frequently become confused when people talk to me, because when I'm extremely confused my audio processing is fairly / moderately / severely affected.
• When I'm extremely fatigued I struggle to follow words on a screen.
• When I'm extremely fatigued I struggle to read more than a few sentences / paragraphs / pages.

Question 8: Getting Around Safely

• Severe fatigue affects my cognitive ability to problem solve. As such I struggle to find my way around somewhere unfamiliar.
• Severe fatigue affects my cognitive ability to problem solve. As such I struggle to find my way around somewhere unfamiliar without it causing further exhaustion.

Question 9:  Controlling your Bowels & Bladder, and Using a Collecting Device

• I am often unable to get to the bathroom when I need to, due to extreme weakness. As such I use incontinence pads.
• I often have urinary incontinence accidents.
• I often have incontinence accidents from my bowels.
• The medication I am taking for #### causes unpredictable loose stools, so I often suffer incontinence which may stain my clothing.
• The medication I am taking for ##### causes urinary urgency, so I often suffer urinary incontinence because I cannot reach a toilet quickly enough.
• I often suffer incontinence at night / in my sleep.

You can include problems with menstrual cycles that are difficult to control or may stain your clothing, in this section too.

Question 10:  Staying Conscious When Awake

• CFS affects my sleep pattern and Circadian Rhythm severely. I need to sleep approximately ### in each 24 hour cycle. My personal body's most comfortable rhythm is to wake at ####, sleep at ####, with #### rest / sleep periods in between. 
• On worst days I will sleep straight through several days at a time.
• I am constantly at risk of passing out due to Orthostatic Intolerance / Orthostatic Hypertension / Postural Hypotension / Postural Tachycardia Syndrome. The last time I passed out due to this was #####.
• When I am extremely fatigued my cognitive function is severely affected, to such a degree that I am at risk of having accidents, or performing acts that are dangerous. My ability to process information is reduced by approximately ##%. [This is what we call brainfog; most health professionals are unfamiliar with this colloquial term we sufferers use].

Question 11: Learning how to do Tasks

• Extreme fatigue affects my cognitive ability. As such I find it difficult to follow the steps taken when learning a new task.

Question 12: Awareness of Hazards & Danger

• When I am extremely fatigued my cognitive ability to process the information surrounding me is reduced by approximately ##%. As such I am at high risk of not processing a hazard or danger before it happens.

Question 13: Starting & Finishing Tasks

• Severe exhaustion significantly affects my cognitive ability and memory. As such when I attempt to learn a new task, I am unable to remember the beginning of the process when I'm in the middle, let alone when I've reached the end.  
• I am unable to perform two sequential personal tasks (ie, brushing my teeth and washing my face), one after the other without taking a rest break in between the two tasks.

Question 14: Coping With Changes

•  Because any activity causes me severe Post Exertional Malaise I have to prepare myself a lot in advance. I usually have to rest before an activity, and then again after an activity. As such, if an activity is re-scheduled it can be detrimental to my health. If it is brought forward, I will be unprepared for it, and may have to cancel due to not being physically and cognitively ready. If it is moved backwards it can be upsetting, as I will have wasted valuable days resting in preparation for the activity.
• Small changes, such as a doctor's appointment running late can affect me severely due to the immense amount of stimulation in waiting rooms (a lot of sound, light that I cannot hide from, etc).
• There is no such thing as a small change to my routine, because every activity I undertake must be prepared for carefully due to needing to pace and use my energy extremely carefully. For example, if I visit my GP for ten minutes in the week, I will need to rest in a darkened silent room, for several days in order to return to what is 'normal' for me.

Question 15: Going Out

• Severe fatigue affects my cognitive ability, as such planning a journey.
• Severe fatigue affects my cognitive ability, as such, navigating a new place are too difficult.
• Severe fatigue affects my cognitive ability, as such planning a journey and navigating a new place are too difficult.
• I cannot walk to my nearest shops.
• I cannot drive.
• I cannot use public transport due to over stimulation.
• Fatigue affects my ability to drive. As such I cannot reliably and repeatedly drive myself anywhere.
• I need someone with me when I leave the house, because I become fatigued very quickly, so can place myself in danger.
• I need someone with me when I leave the house as I need to use a wheelchair, which I cannot self-propel.

Question 16: Coping With Social Situations

• I become anxious about meeting new people, because most people do not understand that severe fatigue affects my speech and cognitive ability. So people often think that I am drunk or slow.
• I become anxious about meeting people I do know, because I know that any activity will have a knock on affect which can last for days or even weeks.

Question 17: Behaving Appropriately

• I often fall asleep in social situations, which some people do not like.
• When I am fatigued my cognitive ability is severely affected. It takes me a lot longer to process information around me, situational and conversational. It often gives the impression that I am not listening, or not interested in what people are saying or what is happening.
• When I become fatigued I experience a lot of pain, which causes me to become very grumpy. This always has a negative affect on social situations.

Question 18: Eating & Drinking

• I need help to eat and drink because my hands are too painful to hold cutlery or a drinking receptacle.
• I need to be prompted to eat and drink because my memory is so poor that I often forget to eat.
• My memory is very poor so I need someone to keep track of when I eat and drink.
• I cannot plan a meal due to my cognitive abilities being affected by severe fatigue.
• I cannot chew food due to TMJ (Temporomandibular Joint Disorder).
• I cannot swallow food or drink due to extreme weakness.