Person with ME


Although this response is rather long I feel it accurately demonstrates how NICE guidelines detrimentally inform M.E. patient care.

Firstly, with regard to the classification of M.E., this urgently needs addressing due to the confusion often experienced by sufferers when faced with G.P s and Consultants who use varying terms to describe a sufferer's condition, and whom advocate treatments that are nearly always based in psychology rather than pathology, which means that sufferers wait many years, often reaching crisis point before they receive appropriate medication or other therapies to help relieve their chronic symptoms.

I soon learned at the beginning of my illness that where possible it was best to avoid any contact with G.P.s and consultants with regard to M.E., I eventually received help from social services regarding care needs and financial support, but 3 years ago my illness deteriorated drastically and so I had no choice but to ask for help; it nearly destroyed me and this is an account of what happened.

Over the last 14 years of my illness, G.P.s have primarily used the term CFS to describe my illness, which is a symptom, one of many that therefore does not accurately encompass the other symptoms (muscle spasms, neuropathic pain, loss of feeling, ligament problems, cognitive problems, etc). Where CFS does not accurately account for my symptoms, I am told that the remaining symptoms are caused by me having a continual panic attack (a diagnosis from a consultant 13 years ago who made me blow in a paper bag and said that the dizziness I felt proved I that I was having a continual panic attack!), accompanied by the newer term, 'Widespread Pain Syndrome'. Had I not insisted on seeing a different Neurologist when I deteriorated 3 years ago I would not have been prescribed Gabapentin and an increased dose of Amitriptyline to help relieve some of the symptoms. In order to get that appointment however, I was hauled into my local surgery and put through a humiliating half hour 'Spanish inquisition' by a partner of my G.P. practice who asked me to justify my mental health status, asked me to explain to him what the difference between M.E. and Fibromyalgia was; he bullied me, treated me unprofessionally, gave me incorrect information concerning the referral process, and treated me with total disrespect. He eventually reluctantly referred me, but made it very clear that I was wasting people's time.

I believe that G.P.s have prejudiced my care because of the classification of this disease and how it is always associated with psychological problems by the G.M.C., because although the neurologist  prescribed new medication, he was not willing to do any further tests despite initially saying that he would; I believe that once he contacted my G.P., the G.P. gave him incorrect information about me with regard to my mental health that then dissuaded the consultant from any further action. What the neurologist did make clear however, was that CFS was NOT to be put on any sick notes since I have a supposedly 'undiagnosed condition'. It maddens me that after all these years I still have no proper diagnosis and I am left in 'limbo land' despite some consultants in other areas having no problems in giving a formal diagnosis. I was then passed back and forth between neurologist and pain specialist while they decided what to do with me, and you guessed it, after the last neurology appointment, I was yet again referred to a psychologist on the premise of attending the pain clinic.

At the pain clinic I was given a HAD test for depression and it was within normal limits. My first appointment was made for 7pm in an evening; by that time of day I am completely exhausted as it is. I was not seen until 8.30pm; by that time I was in a lot of pain as I need to sit on a completely padded and sprung chair if I am to sit for any length of time, my speech was also incoherent and I was upset because of the exhaustion and pain. The pain specialist's report to my G.P. was a disgrace; she took my incoherence for anxiety, questioned my account of my background (apparently, I only 'think' that I'm a music and film technologist: was I expected to bring my degree certificate?), she queried my HAD score, said that I only 'think' that I can't travel very far, said I would be resistant to any rehabilitation because of my 'complex history', said I did not have trigeminal neuralgia (a diagnosis from a maxillofacial specialist in the late 90's), said that the muscle spasms were based in anxiety and so on and so forth. The only reason I was able to find this out was that the same G.P. who referred me, hauled me back into the surgery for another half hour session to tell me about the contents of the letter (he took great delight in this), and told me that I didn't have trigeminal neuralgia. I said that I had a formal diagnosis some 13 years or more ago at the beginning of my illness from a maxillofacial specialist who was the original one who prescribed Amitriptyline for this and that I still have problems, but the G.P. said 'no you didn't because the pain specialist says you don't have the it and I'll print the letter off to prove it'; as if the letter proved anything. If he had bothered to look back in my notes he would have seen why I was initially prescribed Amitriptyline. During that appointment, I told him that NHS Direct had advised me to call an ambulance when I have massive torso spasms as the administering of anal diazepam would help me recover more quickly, but he said that I must NOT go to hospital under any circumstances as I would be wasting hospital beds. It took me up to six weeks to get over these spasms as they crush the muscles so anal diazepam would help me recover more quickly and it would be less painful for me. I was also told by NHS Direct that if I was not allowed to go to hospital I must take 10mg of diazepam not 5mg as prescribed by my G.P. which I did, but because I was so afraid of telling the G.P. about this, I would run out of diazepam before I was due to refill the prescription so I had to suffer until I could ask for more. I was still having counselling at the time via NHS and I was coming to the end of it as I had worked through my difficulties regarding my illness; I showed the letter to my counsellor and told her what was happening with my G.P. and like me she was disgusted. This is just a small example of what we are up against with regard to unprofessional attitudes, abuse and confusion as regards classification and treatments.

The psychology used against sufferers is even worse. During the second appointment with the pain specialist last year, she said she could offer me a new service called 'IMPACT' they were trialling that combined physiotherapy, psychotherapy, and information about coping with pain which she thought I would really benefit from. Firstly however, she said that I would have to see the psychologist for an assessment as this was part of the process. She also told me that I had 'Widespread Pain Syndrome', but when I told her that her diagnosis did not explain the muscle spasms, loss of feeling, exhaustion and sensory problems, she just dismissed me out of hand. I was about to lose my work due to the new more severe symptoms and so I didn't dare refuse the treatment because I was afraid that a refusal to engage with therapies may affect any future benefit claims.

I returned a third time for the psychology appointment. During his 'assessment' he informed me that all the coping mechanisms I had used in the past (self help, professional counselling, and CBT via 'mood gym' online) and all the advice I had been given by various medical professionals, had been absolutely of no use to me because I still had bouts of depression and I was still in pain. I said that I had bouts of depression when my condition deteriorated, which I felt was only natural and that I always recovered, and that up until I started to have massive spasms I had learned to cope with the continual pain. He said that if I would agree to attend a 2 day a week program he thought he could help me transform my life for good. He said that at these sessions they would intentionally cause me to have spasms and I would have to go through a lot of physical pain. Immediately I said this would be impossible as I could barely spend an hour or two away from home without becoming very ill, attendance 2 days per week accompanied by the physical stress he said I would be put through could see me seriously incapacitated for months afterwards. He said that I wasn't going to be forced to do it but then asked if I would be prepared to have 8 psychotherapy sessions at the same clinic instead as he felt I would benefit greatly from that; I reluctantly agreed. Meantime I looked up some information about the psychologist, and he and his colleagues had been developing the 'mindfulness' techniques which is quite new to psychology. It seemed like a good approach to illness so I decided I would fully engage with the psychologist at the next session.

During the first psychology session the psychologist really upset me, bringing up past matters and intimate details about my life that I had really moved on from, but he said it was necessary to bring it all up so I trusted him to do the right thing. I told him I was afraid that after he had brought up all these things he would then abandon me just at the point that I would probably need more therapy, but he reassured me that he was committed to helping me cope with my illness and would see me beyond the 8 weeks if necessary. He gave me a few things to work on for the following week, which I duly followed and I felt really positive about the next session. The psychologist came across to me as a caring individual who really wanted to help me.

The following week at the second session everything changed. After asking me how I had been and talking generally for 10 minutes his attitude suddenly changed, he pushed my file away from him on the desk and told me he could no long help me unless I was willing to attend the 2 full days per week originally offered (I am aware that psychologists use this method of suddenly changing tack to elicit certain actions from their patients). I reiterated that this was impossible, but I asked him what happened at these sessions. I was told that mornings were spent in the gym exercising and afternoons in lectures concerning pain management and the psychology behind pain. I asked him if he would accept me coming and then going home as soon as I became ill; he said no. I told him that research shows that exercise can be detrimental to sufferers with my condition, but he said that HIS research superseded  ALL other research and only HE could help me: NOTHING else would work for me he said. He told me his research was proven to make people less disabled and could even cure a condition. I told him I was too ill to attend such a clinic and people who were as ill as me just wouldn't be able to do the course, so it followed that his research was skewed. He said people in wheelchairs were even attending, but I repeated that they couldn't suffer the same symptoms as me because they would be very ill by the end of the first morning. He then said that if I wouldn't attend he would cancel the rest of my psychotherapy sessions and any contact with the pain clinic; I said no and so he cancelled them.

I was totally shocked at how he had firstly 'messed me up', and then tried to manipulate me into attending by denying me any further appointments at the pain clinic. I worry now that should my pain medication need further attention, I will not be allowed to access a pain specialist. I was also disgusted that this man and his colleagues, who are connected to a well known university that supposedly specialises in the care of M.E. and Fibromyalgia sufferers, are literally running pain specialist clinics and working up a model that will likely be adopted by the NHS. If you thought GET was bad, then this is a whole lot worse as it is based on 'research' that states that ALL other research and treatments are now invalid.

Meanwhile, on top of all this, the G.P. hauled me into the surgery again to demand to know why I had applied for funding for the transport costs involved with attending this clinic when I could easily catch the bus. I told him it was impossible for me to use public transport as it was a two-bus hour-and-a-half trip and that I couldn't even use buses for short trips now. He said that I wasn't disabled as I only walked with a stick and that I am expected to catch the bus. I told him that over the last 13 years, whether at work or periods when I have studied at university, I have always been granted transport letters from G.P.s, that I use a wheelchair for anything further than walking from his reception to his office and that I have 28 hours care per week from the local authority so I am in fact chronically disabled. He said he was totally shocked by what I had just said, but he would have to have a long hard think about it as I did not fulfil the criteria. So he made me sit in silence for 5 minutes while he looked into space to think. He finally agreed but said he was very unhappy about it. It was the 'straw that broke the camel's back' for me.

It took me 6 months to recover from the psychologist's manipulations and the abuse from this G.P. I had to use the anxiety and CBT therapy packages again via 'mood gym', and used self help sites for many months afterwards. It was enough to push me completely over the edge. I had self harmed as a youngster and after a particularly nasty session with my G.P. when he was refusing a referral, after nearly 30 years, I had started to self harm again and it was becoming out of control as my wounds were regularly becoming infected. I also turned to alcohol for relief, drinking myself into oblivion every night and I put on 3 stones in weight because of it, which exacerbated my illness as it was harder to walk with the extra weight. I was determined to find a balance however and worked really hard to combat this mental deterioration.  Recently, I plucked up courage to move to a different G.P. (I had not dared whilst the contact with consultants was ongoing) and I'm happy to say that for the first time for a very long time, I feel like I'm developing a good relationship with a doctor who is objective and caring, but I am very concerned that the previous G.P.s attitude toward me has prejudiced any further help from any consultants. He is a partner in my practice, so funding matters will now go through him with all the NHS changes, so I know he will block access to any further treatment. I looked into making a formal complaint, but I know other people who have done so at my surgery and the surgery have just removed these people from their lists. Other surgeries are too far away, and from all accounts are even worse than the one I already attend. I still self harm but it is under control so I have not had to dress any wounds for some time now; I have also lost some of the weight as I have gone back to drinking on just two nights per week. I dare not even tell the new G.P. about the mental distress I have been in case it goes onto my records providing further so called proof that my illness is anxiety based.


Finally, I know I have gone into quite a lot of detail here about my treatment (and this only covers the last 3 years not the other 12 when I was also subjected to many humiliations), but I hope it demonstrates how utterly distressing it is for sufferers to not only cope with their ever deteriorating health, but to cope with supposedly professional people who use every opportunity to psychologically batter them into submission. Nevertheless, these professionals are informed by the guidelines provided to them by NICE, so it is hardly surprising that these abuses occur: it will not change unless the G.M.C. takes affirmative action to adjust these guidelines based on available medical research so that the next generation of G.P.s can be educated appropriately, and not as at  present whereby they are provided with subjective and dangerous theories from psychologists that informs current medical care for M.E. sufferers. It is nothing less than a disgrace that progressive governments have failed to influence such change despite WHO's classification of the disease; I just hope that these submissions may make a difference.