Canadian Consensus Criteria for M.E.

Below you have the symptom section from the Canadian Consensus Criteria. You can download the whole document in pdf form here. 

Carruthers et al.

DIAGNOSTIC PROTOCOL

Although it is unlikely that a single disease model will account for every case of ME/CFS, there are common clusters of symptoms that allows a clinical diagnosis.

Clinical Working Case Definition of ME/CFS

A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine and immune manifestations; and adhere to item 7.

1. Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.
2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen. There is a pathologically slow recovery period…usually 24 hours or longer.
3. Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.
4. Pain:* There is a significant degree of myalgia. Pain can be experienced in the muscles and/or joints, and is often widespread and migratory in nature. Often there are significant headaches of new type, pattern or severity.
5. Neurological/Cognitive Manifestations: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances…e.g., spatial instability and disorientation and inability to focus vision. Ataxia, muscle weakness and fasciculations are common. There may be overload1 phenomena: cognitive, sensory…e.g., photophobia and hypersensitivity to noise…and/or emotional overload, which may lead to crashŽ2 periods and/or anxiety.
6. At Least One Symptom from Two of the Following Categories: a. Autonomic Manifestations: orthostatic intolerance…neurally mediated hypotenstion (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension; light-headedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency and bladder dysfunction; palpitations with or without cardiac arrhythmias; exertional dyspnea.
   b. Neuroendocrine Manifestations: loss of thermostatic stability… subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold; marked weight change…anorexia or abnormal appetite; loss of adaptability and worsening of symptoms with stress.
   c. Immune Manifestations: tender lymph nodes, recurrent sore throat, recurrent flu-like symptoms, general malaise, new sensitivities to food, medications and/or chemicals.
7. The illness persists for at least six months. It usually has a distinct onset,** although it may be gradual. Preliminary diagnosis may be possible earlier. Three months is appropriate for children.

To be included, the symptoms must have begun or have been significantly altered after the onset of this illness. It is unlikely that a patient will suffer from all symptoms in criteria 5 and 6. The disturbances tend to form symptom clusters that may fluctuate and change over time. Children often have numerous prominent symptoms but their order of severity tends to vary from day to day. *There is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS. A diagnosis of ME/CFS can be entertained when this group has an infectious illness type onset. **Some patients have been unhealthy for other reasons prior to the onset of ME/CFS and lack detectable triggers at onset and/or have more gradual or insidious onset.

Exclusions: Exclude active disease processes that explain most of the major symptoms of fatigue, sleep disturbance, pain, and cognitive dysfunction. It is essential to exclude certain diseases, which would be tragic to miss: Addisons disease, Cushings Syndrome, hypothyroidism,  hyperthyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes mellitus, and cancer. It is also essential to exclude treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as rheumatoid arthritis, lupus, polymyositis and polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse. Exclusion of other diagnoses, which cannot be reasonably excluded by the patients history and physical examination, is achieved by laboratory testing and imaging. If a potentially confounding medical condition is under control, then the diagnosis of ME/CFS can be entertained if patients meet the criteria otherwise.

Co-Morbid Entities: Fibromyalgia Syndrome (FMS), Myofascial Pain Syndrome (MPS), Temporomandibular Joint Syndrome (TMJ), Irritable Bowel Syndrome (IBS), Interstitial Cystitis, Irritable Bladder Syndrome, Raynauds Phenomenon, Prolapsed Mitral Valve, Depression, Migraine, Allergies, Multiple Chemical Sensitivities (MCS), Hashimotos thyroiditis, Sicca Syndrome, etc. Such co-morbid entities may occur in the setting of ME/CFS. Others such as IBS may precede the development of ME/CFS by many years, but then become associated with it. The same holds true for migraines and depression. Their association is thus looser than between the symptoms within the syndrome. ME/CFS and FMS often closely connect and should be considered to be overlap syndromes.Ž

Idiopathic Chronic Fatigue: If the patient has unexplained prolonged fatigue (6 months or more) but has insufficient symptoms to meet the criteria for ME/CFS, it should be classified as idiopathic chronic fatigue.

'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.

Why you need to save any information you find

By S.R. Williams

Independent benefits expert Neil Bateman, discovered that the video was taken down after employment minister Chris Grayling emailed the ministry complaining about, amongst other things, the fact that it told claimants:

• that they are twice as likely to win their appeal if they appear in person rather than having a paper hearing;
• that the DWP doesn’t normally send a representative to the hearing;
• to send additional evidence to the tribunal, when Grayling wants it sent to the DWP.” (from the Benefits and Work
  newsletter).

The video was later reposted. Within 24 hours it had received 4000 hits and was taken down again. Various copies of it keep reappearing on youtube – and are usually taken down (and are then reuploaded).

A couple of years ago I found a website about tactics used by atos centres. That website has now vanished.

The point I'm trying to make is – if you find any information on the internet that can help you with an ESA claim, PIP claim, benefit appeal etc – make sure you save the information and put it in a safe place. (I usually copy and paste the information to a libre office file (libreoffice.org) and save it in my dropbox folder (dropbox.com).

 
[Edit.  You can see said video here.]