A Blog For Those Affected By Environmental And Invisible Illnesses Written By Fellow Survivors
Towards a fair disability test for chronic fatigue syndrome patients
As a chronic fatigue sufferer who has gone through the process of applying for disability benefits I can say without a shadow of a doubt.....the assessment procedures are not set up for conditions such as CFS. I'm sure most CFS patients out there will have come to the same conclusion.
Here in the UK (and I'm sure it's similar in other countries) to apply for any benefits based on you being sick or disabled you must first complete the
'Incapacity for Work Questionnaire' and you may then be asked to attend a medical. Whether you have to attend the medical seems to depend on whether they feel you proved you are unfit for work sufficiently in your answers to the questionnaire. Suffice to say, I had to attend a medical every time I'd completed the questionnaire!
The questions in the questionnaire are arranged in sections with headings such as 'Sitting in a chair', 'Bending or kneeling', and 'Lifting and carrying'. Now these questions are fine for assessing people with disabilities which affect their movement such as people who have suffered injuries or those with severe arthritis. They are no real help in deciding whether someone with CFS is fit for work. Take the 'Lifting and carrying' section for example. The questions are along the lines of 'Can you pick up a 2.5kg bag of potatoes with either of your hands?'. As a CFS patient I would say 'Well, yes I can......but I couldn't do it repeatedly in a work setting without feeling exhausted and terribly sick.' There are small spaces to add extra information but I always found myself getting increasingly frustrated writing the same things over and over again.....'Yes I can physically do this, BUT I would feel terrible immediately after, and probably for a few days after that.'
The medical examinations are much the same as the questionnaire. The doctor asks you to touch your toes, wave your arms around, and generally look like you're at some weird aerobics class. So I go through these tests excelling at all of them as I am a young man. Just like the questionnaire I am never asked how these movement exercises make me feel right then or the next day....or how many repetitions I could do without keeling over feeling exhausted and nauseous. Once again I have to make a big deal of explaining HOW having CFS makes me unable to work due to persistent fatigue, muscle aches, headaches, nausea, and generally feeling like I have flu all the time.
In the end though my efforts at explanation seem to have paid off as I was awarded disability benefits after every medical I attended. I'm sure many of you reading have had a much harder time getting disability benefits than I ever did but my point is that the way disability is assessed makes things a lot harder than it should be for anyone suffering from CFS or related conditions such as fibromyalgia.
What got me thinking about all of this was an article in the latest issue of the Journal of Chronic Fatigue Syndrome. The article looks at this very issue and seeks to find a reproduceable medical test that can demonstrate the inability of CFS patients to work and therefore their eligibility for benefits.
The article refers to research conducted at the University of the Pacific Fatigue Lab which found extreme post exertional abnormalities in CFS patients compared to healthy controls. The critical finding however was that the abnormalities were not apparent immediately but much later.
Based on this and other studies the authors of the article state that the single test procedures currently used to assess capacity for work are not fair on CFS patients since signs of distress and disability are not immediately apparent. They argue that to get an accurate picture of CFS patients' disability a 'test-retest' procedure should be used. This would mean that the patient would attend the standard medical examination, going through the movement exercises as normal, but would then come back perhaps the day after so that the examiners could see the impact it had had on the patient over a period of 24 hours. On re-test the patient would undoubtedly perform much worse than during the initial examination.
While having to attend two medical examinations in this way would be stressful for patients it would at least provide a much clearer picture of the level of disability and mean that CFS patients would be much more likely to be awarded the benefits they require and are entitled to.
This then in my opinion is a positive step and hopefully those who hold the purse strings will take note.
Finally, to anybody about to attend a medical exam I wish you all the best.