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.

'About your illnesses and disabilities' example answer

M.E. / CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome)

• extreme weakness: this morning my hands were too weak to lift my usual mug or turn the key in my front door.
• orthostatic intolerance: onset is sometimes immediate, sometimes up to five minutes after standing.
• acquired dyslexia: varies in severity from struggling to follow an article to being unable to make sense of any words in front of me at all.
• extremely poor memory: short term memory, long term memory, memory recall, all affected badly.
• vulnerability to infection: hyperactive immune system, eg. My body reacts to a cold as if I have full blown influenza.
• ticks / twitches: uncertain how to explain, sometimes a muscle will simply twitch, but sometimes my whole body will be thrown sideways or backwards – it can appear as if I have been startled by something and jumped because of it.
• poor balance: varies from feeling like the world is tumbling, to actually falling over.
• poor coordination / clumsiness: legs tied, trip over my feet, bash into things a lot.
• mental fatigue: difficulty reading, focussing, talking, following a conversation, understanding people, etc.
• altered sensation: numbness or pins & needles in arms and legs.
• recurrent Cystitis: extreme discomfort urinating, discomfort after urinating, extremely painful.
• recurrent Thrush: discomfort and itching around my pelvic area, discomfort walking, difficult to sleep due to itching.
• recurrent Labyrinthitis; inability to retain balance due to inner ear problems
• IBS (Irritable Bowel Syndrome), varying from diarrhoea to constipation. I currently have severe constipation which is causing bleeding and fissures every time I succeed in a movement.
• disturbed sleep pattern varying from sleeping 16 hours a day, to being unable to sleep at all.
• breathing difficulty; feeling like one isn’t getting enough air from normal breathing, people frequently comment on me gasping or sighing because of this.
• I use a shooting stick (walking stick with seat) for general use outside of the house. It aids my balance, helps me coordinate, and I use the seat part when I cannot cope in situations where a person would normally remain standing.
• Alternatively (to the stick) I hold my boyfriend’s hand for support when I have the giddy attacks, and lean on him when I’m constantly falling over.
• I take or hire wheelchairs when I have to be out for longer periods of time, because I can only comfortably stand for about three minutes.
• I drive short distances that I would use to have walked because I can no longer rely on being able to walk that distance.
• I sit on the floor to cut food / mix food / other food preparations (with a chopping board obviously), because I cannot comfortably stand up or sit at the table for the length of time it may take.
• I sit with my feet elevated to prevent giddiness. I cannot comfortably sit on a normal chair in the expected upright position.
• I use a wireless mouse and keyboard as I cannot properly sit at a desk.

Arthritis and disk bulge in lower back

• frequent sciatica, can be too painful to move my legs
• constant discomfort around my lower back
• pain spreading across my lower back after standing / walking for a few minutes.
• I use the shooting stick to lean on to alleviate the pain whilst walking
• I use the shooting stick to sit on in (eg) queues
•  I use a wheelchair occasionally, as standing and walking is too painful.

Hypermobility

• pain around my joints: constant pain, frequently relieved by clicking the joints.
• clicking joints
• occasional dislocation of shoulders

Fibromylagia

• pain in my muscles: can vary from a little pain in a few muscles to extreme pain in every muscle, hurting too much to move.
• pain in my jaw
• my jaw clicks (I probably have TMJ, though this could be due to hypermobility)
• please see M.E. for how it affects me. I am never certain which parts of my discomfort are caused by M.E. and which by FM.

Recurrent cystitis

• pain on urination
• I carry Vaseline with me to protect my private parts, for when cystitis hits me again.
• I also carry Cymalon sachets so I can start treatment immediately.

Recurrent Thrush

• soreness and tenderness around my pelvic area
• discharge

Recurrent haemorrhoids

• blood with faeces.
• extreme pain producing faeces.
• bleeding with every movement.

Recurrent Fissures

• the fissures  re-open every time I produce solid faeces
• extreme pain upon movement, whether solid or not.

Asthma

• requiring emergency inhaler
• incontinence due to coughing hard

Eczema / Dermatitis

• small patches of dry skin appear when stressed
• itchy areas of skin
• sores around edge of mouth

Anxiety / PTSD

• hot flushes
• increased heart rate
• hyperventilation
• paranoia
• constant self analysis
• controlling behaviour
• self harm
• panic attacks
• periods of absentness

PMT (possibly PMDD) (Pre Menstrual Dysphoric Disorder)

• lashing out at friends / pushing friends away without knowing I’m doing it
• self harm
• absent periods
• suicidal thoughts

Hypothyroidism

• the medication causes itchiness
• struggle with cold, especially in winter
• constipation
• hair loss
• irregular periods

I would like the assessor to understand that I cannot really remember what it was like to be healthy and ‘normal’ because I’ve been ill since 2002, but that I used to be an extremely active person. My average week was as follows:

• I worked a 9 – 5 job that I loved. (Your form will show that my last job was working in a shop. That was because my health was deteriorating so I had to take up part time work. Previous to that I was working full time in marketing).
• I walked (half an hour) to the swimming pool three times a week after work, swimming 50 lengths. (I weighed 9 stone 7).
• I frequently went on walks for hours, with friends or by myself, across the town and the fields that lay around it.
• I went to church, twice, every Sunday.
• I worked half a day every other Saturday morning in Oxfam on the shop floor.
• I did shopping for the elderly, and spent time sitting with them talking with them and listening to their stories and concerns, and praying with them.
• I attended the university Christian Union every week, but was no longer a part of the committee as I was no longer a student.
• I was on the committee of the ‘World Mission Group’ (part of my church) which met every other Wednesday.
• Friends and myself met frequently to make music, singing and playing instruments together.
• I used to go clubbing at weekends, frequently travelling to and staying in London to do so.
• I spent time talking to the homeless, walking the streets with them, and buying them food.
• I was registered with five or six charities, possibly more, giving donations monthly by direct debit.

I’ve lost absolutely everything through being ill. Only one friend from those times I can still call a friend. The rest got bored because I could no longer participate in what they were doing. My family do not believe that M.E. is a genuine condition, still unfortunately remembering the era of yuppy flu. It’s highly frustrating that I can no longer volunteer for Oxfam, and can’t afford to donate to charity on a regular basis. I cannot cope with the stimulation that music brings, so cannot sing, play instruments, or even listen to music; sometimes I cannot even watch the TV due to the sound, or watch it or use my computers monitor and phones because of the light and the way they move.

I cannot swim or go for walks, so my weight has ballooned. 18 months ago I was nearly 14 stone. I am less now because I went through a phase where my body would not absorb any nourishment at all, so I lost a lot of weight. (I thought I was going to die). I cannot attend church, any committees, groups, or sit with elderly people, let alone shop for them. I cannot even shop for myself. Obviously I cannot fathom clubbing or parties (and not because I’m too old either). If I wish to stay with friends, I have to prepare myself for about a week before hand, and talk to them about my needs and problems which is highly embarrassing.

I will never have children because of my health. I tried. My hips started to dislocate at only five months; had I carried to full term the effects would have been detrimental. The reality is that if I’d had a child the father would have to have been responsible for 95% of raising that child, so I have now made the decision that I will never try again. A very big sacrifice for any woman.

Before I left my full time job I was earning a junior wage of £15,000 (over a decade ago). Assuming my career had progressed as I had planned it to, I should be earning at least £30,000 now. Living on ESA I would receive approximately £5000. If you look at my original wage that is a pay cut of £10,000. If you look at the wage I hoped to be on by now that would be a pay cut of £25,000. There is no way I would be choosing that kind of pay cut. The benefits of being on ESA certainly do not outweigh the benefits of working, especially working in a job I loved.  There is nothing on this planet that I would love more than having my health back.

A bad day for me is when I am struggling with extreme fatigue, extreme pain, or both, and possibly with severe anxiety too.

Extreme pain means that it hurts to make the smallest movements; moving fingers to type on a keyboard or phone, straightening my arms or legs, turning my head. The muscles in my arms, legs, hands and feet are so painful that the slightest touch is agony. I have a burning sensation across my shoulders and neck, pain across my lower back, and really bad sciatica down both legs.

I am very sensitive to sound and light. I need to wear dark glasses or sit in total darkness. I cannot cope with extreme noises; music, bangs, shouting, or whispering, and sometimes cannot cope with any noise at all. Yet on such days it is too painful to insert ear plugs and I cannot bare the pressure of ear defenders against my head.

Extreme fatigue means my cognitive ability is severely affected. I cannot understand what people are saying to me, or anything written in front of me, and cannot string a sentence together. I find it hard to speak; I sound drunk. It is hard to coordinate movement. I am sometimes so weak that I cannot stand up because my legs won't support my weight. If I can stand, the Orthostatic Intolerance is so bad that trying to remain upright causes severe nausea and diziness.

Bad anxiety means that I spend most of the day crying. I scratch at my arms, legs and face, causing abrasions and bleeding. I revert to childhood memories, babbling things that make no sense. I become totally lost in unreality. I hide, for example in a cupboard or under the bed, cuddle a toy or a blanket, sobbing and rocking until someone stops me.

On my better days I am able to focus more clearly, for two to three hours at a time at best. On such days I am able to enjoy reading for example (though reading makes me tired and gives me headaches). I still experience vast pain on good days; my legs and arms ache, and my knees and hips seize several times throughout the day. On good days I can use ear plugs to cope with the sensitivity to sound better. My balance is still poor, the twitches / ticks do not cease, but I can remain in a stationary position for about five to seven minutes before I start experiencing discomfort. I struggle to understand what people are saying to me even on my better days, but when my cognitive ability is not affected I can either work out what they are saying or lip read them. On my better days I am unlikely to experience anxiety at home, but still become anxious in public, especially if I am alone.

An average day for me involves fluctuating levels of pain, fatigue, and anxiety. I sleep poorly. My alarm alerts me at 8am that I must take medication. I then usually get three hours of better quality sleep than I get in the night. I rise between 11 and 11:30am. I will only shower (sitting down) if I have to go out during the day. Most days entail pacing my activities. I try to spend a little time on the computer, a little time watching television, and a little time doing anything else that needs to be done (ie opening letters). I interspace these activities with rest periods. A rest period means I lie down with my eyes closed, no light and no sound; I may or may not sleep during these periods. They may vary from half an hour to two hours or more, as needed. If the phone rings, or someone comes to the door I will normally experience raised levels of anxiety, rarely answering either.

The majority of my days are average days. I have between seven and ten bad days a month. When I have bad days they tend to string together;  When I have good days they tend to be isolated, so I only have one good day at a time rather than a string of them; I usually have about four or five good days in a month.

I am for the purpose of the form describing the worst of the average days, so that you know what I am capable of most days.