Person with ME


In October 2006 I became continually ill with a flu like virus that became increasing worse until I was virtually bed-ridden and could  no longer continue at college.

The following March 2007 I was so frustrated with continuous flu that I managed to get to my doctors where thankfully I had a Doctor who was new to the practice and he recognised the illness immediately as being PVS, CFS or ME- he indicated that the three names were for the same illness.

In June 2007 I became paralysed I was admitted to  Hospital for tests - CAT and MRI scans and various other tests.
But I was placed under a neurologist - as even my own doctor was convinced that I had had a stroke even though he had told me in the march of that year that I had M.E. 
When it transpired, via the results, that I had not had a stroke I was immediately placed on a heavy physical routine - but it became obvious this was just making things worse, at this point I had been in hospital 10 days and the neurologist said I had to improve to a certain extent before I could go home - but I only went in for tests!!

When the physios assured her that I was doing my best but that if I did indeed have M.E. (and that) this intense physio would not help but worsen the symptoms, the neurologist immediately referred me to a psychologist, as she also believed M.E. is a mental illness. She told me she would only allow me to go home if the psychologist gave me the all clear. 

At half 8 the following morning, I was wheeled from the ward, by the psychologists. I was still in my PJs, needing the toilet badly and had not yet had breakfast, so asked if it could wait but was told that the appointment could not be changed. I was wheeled into a 6x6ft room, without windows, with door behind shut and subjected to 3 hours of testing - various questions designed to grasp my mental abilities etc.  By the end of the 3 hours I was very tired, emotional and wet and extremely angry.

The following day he came to give me the results, his words were these:
"If you are to be believed, and your answers truthful, then you have the mental age of a senile 71 year old, and I should section you immediately! Now if you would truthfully like to tell me what personnel experience led to your M.E.  then I might be able to help you! What devastating event led to this mental problem, what made you so depressed?"

I could cheerfully have throttled him and was appalled at this approach to my illness!! I told him in no uncertain terms that there had been no devastating event, that I had not been depressed, that actually my life for the previous couple of years had been remarkably uneventful but extremely happy.
He continued to insinuate that something must have happened and that I was obviously depressed - so I pointed out to him that the only event had been me becoming ill and that any depression I had was a result of that!
He then told me he would recommend that I be placed in another hospital to have further psychological review because I was obviously not trying and was actually deliberately acting ill to gain attention!
I got extremely angry at this point and told him to go away.
The nurse who had been listening in, told him she thought he should had better leave as he was upsetting me and assured him that I was not enjoying myself being in hospital - quite the opposite - that parted from my husband and 6 children I sobbed most evening and begged to go home! He left, and the nurse assured me that I would not be kept in hospital as she herself would corroborate my illness and deny his diagnosis and would offer up her report and the physios report to maintain this position. She also suggested that I should make a formal complaint about his behaviour - but I did not as I was worried this would postpone my going home.

Thankfully the Sisters and Physios reports convinced the Neurologist that I should be allowed home and she told me that in her opinion my earlier diagnosis of ME was confirmed and offered to speak to an ME consultant and thereby get an appointment for me.

I saw the consultant only once in late August of 2007, for confirmation of diagnosis. He referred me for re-hab group sessions and I attended a group at a local Hospital in early November.
To be very honest I was very dissatisfied with the group (not the other sufferers attending, just the group ethos really) and ended my attendance in early 2008.
There are so many contradictions between medical practitioners and those working within the ME area and these became self evident during my time at the group sessions:
1) The group facilitator specialising in ME) seemed not to know about the paralysis which effects some ME sufferers - and labelled my left hand side paralysis as a "Stroke episode", even though the Neurologist said that I showed no neurological signs of a stroke - though my symptoms mirrored a stroke. That was the first contradiction - the ME consultant seemed to know of this paralysis but Sue seemed unaware of it as a symptom of ME.
2) Graded exercise - the consultant felt that even with graded exercise that I would not recover to any great degree and the best that could be achieved, in my case, was fewer relapses. The facilitator was convinced that I would recover ALMOST FULLY within a fairly short period and that with graded exercise I would achieve this. Also their regime of graded exercise was far to strenuous for me and I was forced to abandon that style and develop my own at a more suitable pace. With their regime I was relapsing frequently under my own I have had few relapses - though it may have taken longer then her method, I have able been able to extend the length I walk from 10 ft to 16ft over the last 18 months - and have sustained this distance. Where as under their method I was continually going one step forward and three back, if you will pardon the analogy!
3) Reaching a plateau - the consultant suggested that graded exercise would only assist me so far and I would plateau off at a certain point and possibly go no further, but might occasionally show small improvements - the facilitator suggested that I would  NOT plateau but would steadily improve until I was relatively well - when the consultant explicitly told me that in my case, FULL RECOVERY TO MY PREVIOUS SELF WAS AN IMPOSSIBILITY - to use his words "I am afraid in your case that you will never return to your former self and unfortunately you must learn to adjust to this, the best we may hope for is that we are able to slow or confine relapses to the minimum". HE was quite correct - I have plateaued off and have been unable to go any further for the past 4 months - however I am hopeful that I have merely stagnated and will, in time, improve more.
4) Mental versus Physical - the consultant never suggested that "it was all in my head", so to speak and dismissed the psychologists' report when I asked about it,  and said not to see the report as my diagnosis. He actually agreed with me that the illness led to depression and not that depression led to the illness. However the facilitator flatly disputed this -  their condescending attitude in this regard let me to simply nod in the appropriate place and long to leave the appointments as soon as possible. It was clear that she believes, by their whole demeanour that this is a mainly mental illness, with physical side effects instead of a physical illness with mental side effects.
5) Listening to the patient - the consultant took the time to read my entire file and ask me pertinent questions, listening to my answers and verifying my responses. If I had questions he answered honestly, it appeared, he told me that he is ,in fact, not a specialist in this field and it was given to him, and that some questions I had he truthfully could not answer and apologised for this. My opinions on my illness, he excepted and did not dispute though they may have differed to his. However the group facilitator flatly refused to answer those questions they found difficult, belittled my opinions as negligible and expected that I should agree with their opinions without question, if I disagreed or questioned  their statements they always had the same response "Well you won't get better with that attitude, now will you?!".
6) Group ethos - the consultant said the group situation mat not benefit all ME sufferers and especially those who were severe, but encouraged me to try it out. He never suggested that the Group would be answer to all ills and said that each ME sufferer was individual with individual needs and to take note that this was not a case of "one size fits all". Whilst the facilitator said that there would be a graded exercise planned to me - that was not the case. On entering the group environment it was clear that all the others members had virtually the same plan! The credo of if you complain you just don't want to try and wont get better - echoed through the group - many of the group echoed that exact sentiment - it was clear that those invited to the group had been invited because they would "tow the line" more readily then those who opposed that ethos!
7) Individual needs - it is patently obvious that each ME sufferer, whilst having correlating symptoms with other sufferers, experiences this illness in an individual manner, and this was the consultants' belief. However those individual needs are not noticed or are negated by the facilitator - they constantly compared persons and use previous patients as examples of what we could achieve if we tried. My needs were most definitely IGNORED, when I arrived in the group I found I was the only one in a wheelchair, the only incontinent, the only one of morphine pain relief - to be exact I was the only one with very severe symptoms. People had driven themselves on scooters and in cars, I saw one person jump of the bus and run to the hospital door as they were late. I do not say that they are not ME sufferers, but when I spoke with them is was clear that they were certainly doing far better then I, and many for the most part had never had the severity I was experiencing. In fact a few recoiled in disbelief when I mentioned the severity. When I asked the facilitator were the other severe sufferers were they said there were only a few and they didn't want to come - I responded that I was not surprised! I asked if they understood just how demoralising it was for me that the other members of the group did not believe or did not understand my position as they had not been in that position. They responded that I should look at it positively: with me being there, they would realise that their own symptoms were not so severe and this would help them improve. and secondly, that I would be able to see their improvements and thereby improve myself.

I left the group feeling angry and disappointed that I had merely been a tool to help others improve, whilst my own improvement appeared secondary!
8) Adaptions and aids - the consultant fully understood why I use my chair for longer distances and why I have various aids and adaptions as I explained that these were merely AIDS to my recovery and allowed me some independence whilst trying to achieve this. He believed me when I said that these aids and adaptions were a MEANS TO AN END only and only used to avoid relapses. The facilitator was convinced that I would become reliant on these aids & adaptions and not do things for myself. They did not believe that these items helped with independence nor that I only use them to avoid relapsing. Despite my assuring her that I do not use the chair in the house, take myself up and downstairs (slowly but eventually) etc, they remained unconvinced of my adamant belief that I would improve with. rather then without , these aids and adaptions. They relented only once and gave me a perch chair so that I could cook or make a cup of tea - but it is so uncomfortable I cannot use it. However the hospital had already referred me to an Occupational Therapist  who agreed with my opinion of aids and adaptions and had given me the aids and adaptions I needed, e.g. a wet room and walk in shower with chair - it is wonderful to be able to sit to shower and means that I am not left totally exhausted after a shower and do not have to be put to bed.
I hope you can see, by the above, the clear contradictions and how this led to confusion, not only for myself, but other sufferers who have been unfortunate to have suffered this contradictions.

 When I mentioned to the group facilitator that the opposite had been suggested by the ME consultant, or that I was not being understood properly, they would always refer to some one or report as an example that she was correct. The contradictions that were exhibited with these two persons is not a one off! I noticed that this runs throughout out the medical profession and their facilitators - even in the same Doctors Surgery - were two doctors had contradicted each other when I have gone to them!
The confusion and frustration leads you to look for other avenues -  but they are equally as contradictory and confusing!!!!
It would appear that dependant which side of the ocean you are as to what you are told - I have been told this is due to British Doctors, in the main, being told that it is a mental illness. Where as abroad it is obvious they are grasping this physical illness for what it is! This is reflected in the constant twoing and throwing between the title of this illness - CFS seems to be the title more readily given when they believe it is a mental illness. M.E. seems to be used when referring to it in a more physical manner.

It was also intimated at the re-hab group sessions that we should not divulge or comment outside the group on what occurred within it - confidentiality was the excuse - and I do not apologise for the use of the word "excuse".
I fully understood the need for not relating personnel details - I personally felt that went without saying - but I do not believe that was not the real reason for the intimation. In my opinion the real reason was they did not wish the obvious contradictions and deficits within the group sessions to be voiced publically - as this would put people off from attending the group and would subsequently damage the group and its ethos. 

Something I forgot to mention, which did impress me, was the ME consultants' full and complete statement (apparently very long) to the DLA, when they requested information of my diagnosis for my award of benefits. Initially they had asked for my General Practitioner to report, but I asked that they speak to the consultant and within a very short period I received benefits which were back dated. Also the amount of benefits I received was, in my opinion, appropriate. But I have spoken to many who on applying for benefits have found themselves turned down or given unsuitable amounts - many of them were not aware that they could choose who gave the diagnostic report and their own GPs had done so as many had not had any consultation with a ME consultant or similar practitioner.
Many of those I spoke to within the group did not have full and important information of benefits and form filling, in fact, it was actively discouraged as a discussion piece, and I got the distinct impression that the group facilitators felt that long-term / illness associated benefits were not required - as we would soon "be on the mend" and that, in most cases, it is not a long term illness!

This is obviously wholly incorrect - all those I spoke to have suffered for this condition for YEARS not MONTHS - and were financially struggling to maintain themselves - many on sick leave from work felt pressurised to return to work long before they were fully able to do so purely because they needed the money. Others had lost their jobs or were unable to look for work because the illness is unpredictable and very individual in its recovery time.
Most of the difficulty with obtaining in benefits was also due to the "beliefs" of the medical staff involved in their care - the majority still see or are instructed to see ME as a "mental" issue and not as a valid medical illness - and so this is written in the sufferers report and thereby they are deemed to not fit the "criteria" for these benefits OR that their symptoms are not SERIOUS and LONG STANDING and therefore awarded little if any benefits at all.
 Thankfully I now have the highest rate care and mobility components and have no review date - but many (from the group) of the lucky few who did get benefits have found that they have 3,2,1 yr or even bi-annual reviews - this is clearly wrong. I have been told by other sufferers that if they happen to have a review on "a good day" they may have benefits lowered or revoked whilst others, during a relapse, rarely get a higher amount.

 Many felt unable to write their forms, due to memory issues associated with ME, and the backlog for facilitators to help them fill forms out, such as CAB, is horrendous. Invariably they fill the form out incorrectly (e.g. they state their good days instead of their worse days, as they should) and sometimes just give up as the forms are just to difficult for them. I was shocked in group sessions that so many sufferers were in such financial straits, and offered advice where I could - most were more then grateful and decided to appeal against benefit decisions or apply for benefits where they had previously not. But I felt I should pass on  give useful information to others, we have to help one another don't we?
I have been one of the few fortunate sufferers, who had a friend to help fill the forms out and a satisfactory diagnostic report, but if I had not  I would not have received the amount I did, then we would be in serious financial difficulties as my husband had to give up his full time job to take care of me and our children, as I was no longer able to do so.
Bad enough to  suffer a debilitating and demoralising illness, and suffer further due to the  BMA seemingly unwillingness to acknowledge or diagnose this illness correctly, but now to add disgusting icing to an already inedible mouldy cake, to suffer, along with dependants,  the great financial difficulties that are caused through long-term illness!

When will things change?!
Don't we suffer enough?.