BlergInfo -CFS/ME


Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis, is a condition suffered by many thousands of people and yet is often shunned as being a 'yuppie flu'. This is not the case as I aim to show you in this section.

I am currently in the process of appealing against a decision not to give me Disable Living Allowance. It was mainly turned down due to the comments made by a doctor that assessed me last august (this is now May!) I was turned down just after she assessed me and i missed the chance to appeal that time.
However when i applied again in November when i was worse than i had been in August. They churned out the same decision without even looking at it. When i complained, they looked at my claim again, and said that i had got worse, but went back to the doctor's report done in august (this was now late January) and decided to go with that instead of sending someone out to look at me again -apparently it is impossible for people to get worse in the three months between august and november. I have contemplated throwing them down the stairs and asking them to time how long it takes them to break a leg.
Anyway. I am now going to insert a letter which i have put in my evidence for my appeal -partly because i want to show you what CFS is like to live with, and partly because i want to show the world how frustrating and rediculous the people in charge of Disabled Living Allowance are, and how biased doctors (still!!) towards CFS patients.



To Whom It May Concern:

I have decided to write this letter as evidence to present at my hearing for disability living allowance.

I was diagnosed with Chronic Fatigue Syndrome in April last year, but have been ill since contracting Glandular Fever in May 2000. Since my first application for DLA, last summer, I have become increasingly worse. My existing symptoms have worsened and I now have more problems than I did last year. I know that the tribunal is not meant to take into account the worsening of symptoms, but as the nature of CFS is that it fluctuates, I feel that what I describe now is not that different to how I was in November, even though I now have even more bad days. I have also had to learn more coping techniques such as using a walking stick daily, wheelchairs more frequently than I used to, and being cared for even more by my partner.
To clarify CFS as a real physical illness I have included two definitions of it and also this quote.

The Chief Medical Officer, Sir Liam Donaldson, said
"The Working Group report confirms that CFS/ME is a debilitating and distressing condition affecting many people. The causes of CFS/ME are not fully understood.”
(General Medical Council website www.gmc-uk.org in response to The Working Group report)
All those underlined in red relate to my condition, or are symptoms that I suffer from.
The Oxford Criteria for CFS are:
-A definite onset
-Fatigue as the principle symptom
-Fatigue which is severe, disabling and affects both physical and mental functioning.
-Fatigue which has been present for a minimum of 6 months during which it is present more than 50% of the time.
-Other symptoms which may be present, particularly myalgia (muscle pain), mood and sleep disturbances.

The CDC Criteria for CFS are:
CFS is a syndrome characterised by fatigue that is:
-Medically unexplained (i.e. not caused by conditions such as anaemia)
-Of new onset (i.e. not life-long)
-Of at least 6 months duration
-Not the result of ongoing exertion (e.g. overwork or athletic over-training)
-Causing a substantial reduction in previous levels of occupational, educational, social or personal activities.
In addition, there must be four or more of the following symptoms:
-Self reported problems with short-term memory or concentration (cognitive defects)
-Sore throats
-Tender neck (cervical) or armpit (acillary) glands
-Muscle pain (myalgia) (not often but sometimes)
-Headaches of a new type, pattern or severity
-Unrefreshing sleep
-Post-exertional malaise lasting more that 24 hours
-Multi-joint pain (arthralgia) without swelling or redness
(definitions from Living with M.E. the chronic/post-viral fatigue syndrome –Dr Charles Shepherd, Medical Director to the M.E. Association, 1999 –new edition published by Vermilion, The Random House Group LTD.)
I shall now go through the original reasons for dismissal of my application and the reasons I feel this decision is wrong.
The decision for not granting DLA was given as

“Miss Small has good and bad days however on average she can walk 200 metres before severe discomfort…”
The nature of CFS is that its symptoms are not the same from one day to the next, or indeed one hour to the next; for example I can feel as if I am having a good day but suddenly get extremely tired and ill and need to be carried to bed. I also do not know where the figure of 200 metres appeared from. In my form, I wrote that on a bad day I often fail to walk anywhere at all. I have not been able to walk 200 metres without discomfort for well over a year – even on a good day! It is stated in my medical report that on average I can walk 200m, 800m on a good day, 50 on a bad day – but this is far from true. All I can think is that I was too tired to think properly and was unable to gauge how far I was capable of walking. This figure is wrong by a factor of ten. On a good day I might be able to walk 80 metres without discomfort, not 800. On a bad day, I may just about struggle to 5 in total (nowhere at all without discomfort!), not 50. An average of 20 is much more realistic than 200. I apologise for this mistake, if it was indeed mine – but as I mention at various points, and as is mentioned in the definitions, mental problems are frequent. I was very tired on the day of the visit from the doctor, and so was not mentally capable of making these estimates. However if it was the doctor’s opinion, all I can say is that she was highly mistaken. I now walk with a walking stick, even around the home, and am in the process of acquiring a wheelchair for the increasing number of days when I cannot move at all. The medical officer also says that it would take me twice as long as a healthy person to walk a given distance, despite the example I gave to her of it taking me an hour to walk a distance that would take a normal person about 8 minutes. This is 5 times as long, not 2! The medical report also states that I need no physical support from another person when walking outdoors. This is untrue – before I had access to a walking stick (and even now though I have one) most of the time I need held up to keep my balance and to keep hold of me in case my legs give way both indoors as well as out.

“…no halts balance good she does not require any guidance or supervision in familiar/unfamiliar places…”
I have mentioned at various points during my application that when I am exhausted it is very important that I try to keep going – hence the no halts. This is because if I were to stop, I would lose my balance, my legs crumble beneath me and I would not be able to get home. I therefore try not to halt, even when my steps get as small as an inch or two at a time, because to stop would be worse for me. My balance is alright in that I am not dizzy, but I do often stumble through my legs being incapable of supporting me. I mentioned both of these to the doctor sent to examine me, yet she just wrote ‘no halts’ and ‘good and level’ balance rather than including a reason for the lack of halts or her opinion of why I have good balance. As for the guidance/supervision, I do not tend to go out on my own anymore unless it is an emergency or I know I am getting on a bus outside my home and met from it at the other end. This is partly because I can get too tired to be able to support myself, but also it is because my tiredness is not only physical but mental as well, and I lose track of what I’m doing and where I’m going. I would not even be able to contemplate going somewhere where I did not know the layout as I would not know where I could aim for to get help if I needed it. I do need to be accompanied. (Again the doctor wrote ‘none’)

“…she is safely mobile in her home and can do all self care unaided…”
This is completely wrong –despite being stated in the medical report. I can no longer go in the bath as I find that it tires my muscles too much and if I were to sit in it I would be unable to get out again. This means I am only able to have showers, and as this entails standing up (when able) and when I am not able to stand I don’t have the energy to wash myself anyway, it has become necessary for me to be showered by my partner. When I am too tired to even go in the shower, he washes my hair for me over the side of the bath because I cannot lift my arms. I am often lifted out of bed and dressed, but it is more frequent for me to stay in bed if I am that ill, therefore it is more usual for Chris (my partner) to undress me and get me ready for bed and then help me into the bed as by that stage I am incapable of moving myself. I need help to get to and from the bathroom and to move around my home. This is usually in the form of being half-carried/supported.

“…she can prepare and cook a main meal for one…”
The best I can do is supervise. I can direct someone as to what needs doing for a meal but I am unable to stand at the cooker. Most days (4/7), I can put a pizza or bake in the oven or a meal in the microwave as long as I sit down again straight away. However I feel that this does not constitute a proper main meal. Anything that involves standing and stirring is beyond my capabilities most of the time (6 days a week on average). The new information/change of circumstances listed in the reconsideration said that: ‘D/P has more bad days 4-5 out of 7. D/P requires help with all care needs and cannot walk. D/P cannot cook, cannot stand long, mentally not capable of cooking main meal. D/P gets confused and forgetful and D/P cannot lift pans.’
I would have thought that this being acknowledged would mean that I should at least get a small bit of the care component of DLA! As for being mentally capable of planning a meal –I can only do this far in advance when I have the energy. Unfortunately when it is time to cook the meal I would be unable to think what needed doing when. I lose track of time and forget things that need to be done. Even the medical officer stated that I have ‘difficulties’ with cooking, and that was when I managed a lot better than I do now!

“…is mentally competent and aware of common dangers…”
As stated previously I cannot go out on my own. I do seem competent and aware most of the time, however when I am tired I am unable to perceive what is going on around me. I have had to be grabbed by friends/family several times to prevent me from walking out in front of cars, and other such things that others may have been very capable of avoiding. I find it very difficult to think through or be aware of much when I am having a bad day. The most I am mentally capable of is staring at the television, let alone remembering to turn off a hob. The medical officer states that I do not suffer from altered awareness, despite me telling her that when I am tired I am not aware of what is going on around me.

“…I do not consider her to be at substantial risk of falls.”
As stated in my application, I do fall once or twice a day on average. My legs give way beneath me without warning. I collapse on the floor and cannot necessarily get up again. My legs shake and I cannot get them to lock and allow me to regain my balance without assistance. This is one of the reasons why I have been forced to use a walking stick. It is mentioned in my medical report that I fall a couple of times a day, yet somehow this is ignored to say I am not at risk of falls!

Now that I have been through those points I will talk you through my symptoms – and what it is like to live with CFS.
To ‘set the scene’ so to speak, I will start at the beginning. I am a 21 year old student. Before I contracted Glandular fever, and CFS I was happy, healthy, very busy and I had 3 jobs. Not bad for a 17/18 year old.

My life now consists of lying in bed, or on a good day sitting on the sofa, with occasional trips to university on the few hours when I feel able to go in. I can’t remember the last time I managed to go to all my lectures in a particular week (I only have about 10 hours a week scheduled), I don’t think I have been able to for over a year. I constantly have pain in my glands/neck, and also now suffer from IBS (irritable bowel syndrome) which was diagnosed a couple of months ago after suffering for several months, and is mostly under control due to medication. I feel exhausted most of the time, not only physically but also mentally and emotionally. I lose control of my emotions causing me to cry/giggle or be cross for no reason what-so-ever. I am too mentally tired even to read most of the time making me feel as if I am useless. As for the physical exhaustion –this is how it affects my day. I have to go to sleep early every night, and apart from waking up to take my IBS medicine I usually sleep until mid morning –no matter what time I went to bed the previous evening. I do not have the energy to clean the flat. This is something that causes me great distress as I often attempt to tidy a small amount, or sit and iron for a few minutes only to tire myself out before I have even started.

When I am tired, I cannot move my legs. They become too heavy and it’s as if they can’t hear what my brain is telling them to do –I need to concentrate very hard to make them move. I cannot lift a cup to my mouth and need to drink from a straw instead and I am left sitting on the sofa until I can be helped to the bathroom or the bed. The tiredness I feel is a mixture of the feeling you get when you have the flu –often with the temperature, the aches and the grogginess as well; and the feeling you have after doing a lot of exercise. CFS is not just tiredness –it is the absolute exhaustion of all parts of the body and mind.

I cannot ‘walk’ very much at all now, and am still struggling to cope emotionally with my lack of freedom and mobility. I often find it more difficult to stand still than I do to keep moving even a little bit, hence being unable to cook as it involves standing for a long period of time. I can’t even do the washing up! I need helped to do most things and would be incapable of looking after myself or living alone. Both my doctor and consultant state that I am suffering from a severe form of Chronic Fatigue Syndrome. In my opinion, judging by the way I feel most days and the changes in symptoms I am getting worse rather than better. I have more bad days now than I have ever had before.

I find people very tiring, in that as I spend most of my time sitting on the sofa with only myself for company, I find talking to someone, especially if there is more than one person in the room, very tiring and difficult. This is another reason why I cannot go out unaccompanied –as the hustle and bustle around me is too much for me to physically cope with any more. I get confused and disoriented, and scared when I am with a group of people as I know that I am not able to keep up with them or to put my thoughts across anymore. My words become jumbled and my sentences don’t make as much sense as they should. It takes a long time and a lot of effort to say anything when I get tired, and this means that I cannot really be out on my own as if something happened I would not be able to make anyone understand what I meant. This is another reason why I wanted to write this down and submit it as evidence – in case I am too ill to make much sense on the day of the tribunal.

As my condition had worsened since August, I did assume that I would have been asked if I needed another medical examination, however I was not. Three months can be a long or short time in relation to CFS. In this case it was quite a long time. I also feel that because I was not able to put my thoughts across properly to the medical officer and made errors through tiredness I was wrongly turned down for DLA. I hope that this will be able to be sorted out.

I hope that this has helped your understanding of my case for DLA.

If I were to be granted DLA, I would perhaps be able to get a cleaner for an hour or two a week to look after the flat, or to put the money towards something to help me in and out of the bath. The other thing I would like to be able to do is to make use of a motability scheme. At the moment my only means of transportation is public, such as buses. This is not ideal (as you might gather) as it is very difficult to get on and off and even worse to have to wait at bus stops –most of the time I am unable to go out, despite being accompanied, even on a good day as I could not cope with it. With access to a car (and driven by my partner), I would not have to navigate buses to enable me to access the university, or town which in general tires me out before I have even got to where I’m going! This would make my standard of living much better as I would be able to feel more useful, and also see more of the world than just my living room. At the moment, even when I have what I consider a good day, I find it very difficult to go and do anything, but if you were to award me DLA then I would be able to feel more like a person and less like a vegetable.

Thank you very much for all your time.

Miss Nikki Small



If anyone reading this feels that they have any ideas as to how to help my appeal -then please let me know! Thanks! I will update this page again soon (i hope).






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