Month: Oct 2018

From the symptoms listed in my medical records historically from 2003 to 2011 multiple MUS are reported including, IBS, MCS, atypical face pain and later tinnitus. Such symptoms are strongly indicative of the potential for ME/CFS and indeed (though it’s poorly recorded in my medical records) I repeatedly attended GP’s for fatigue and malaise prior to becoming more seriously unwell in 2011. All doctors ignored all this compelling evidence for a MUS-related illness, instead attempting to fit (often made-up) symptoms to a mental illness diagnosis.

From 2011 onwards there are similar MUS symptoms reported including sensitivity to many drugs, and later concentration worsening symptoms. Such experiences are very familiar to ME/CFS suffers and indeed worsening of symptoms following concentration (mental exertion) is listed as a key symptom of ME/CFS. None of these are symptoms of Bipolar Affective Disorder, and there is no evidence that clinicians considered ME/CFS or anything other than mental illness. There is no mention in the medical records of my stated malaise or of me feeling unwell (like how you feel like inside with the flu was my description), nor of the fatigue or brain fog or palpitations, all of which again would have again pointed towards ME/CFS and not Bipolar Affective Disorder.

Further, I reported when I triggered the symptoms feeling inside like I was on the motorway and the foot had been taken off the accelerator which I now know was orthostatic intolerance, and there was no exploration of such description with the assumption that I was referring to mood. It appears that medicine had decided I was mentally ill and looked for symptoms that would fit this collectively decided diagnosis, irrespective of the facts or the iatrogenic harm that would be done to me. Far be it for me, a mere patient, to know their own body and to know their own mind but they essentially ignored everything I was saying imposing an unasked for mental illness diagnosis (because I know what nonsense psychiatry is). Repeating the violations that psychiatry often inflicted on other gay men in the past and mirroring similar violations that occurred in my childhood.

I now know everything went wrong after a consultation in May 2012 where the doctor wrote that I said I was suffering from “’attacks’ of mania”. I have never heard of such an expression and when reading this entry in my medical record I was astonished that a single wrong entry from years ago could cause me such problems later on. She even uses quotes for ‘attacks’ to imply she’s quoting me. Unfortunately what she states is simply untrue. I never said “’attacks’ of mania” and nor would I ever have said such a thing, as it would ruin my career. At the time I was working earning £100k/year and was to continue working for another two years. It’s completely ludicrous to believe that I would say that knowing that the security vetting agency could later read my medical records. Indeed because of this factually untrue statement a doctor later wrote to this vetting agency stating I reported suffering from “’attacks’ of mania” contributing to my career being finished. I can state categorically that her statement is factually untrue because unfortunately for this doctor my partner was in this consultation. He can confirm that I have never used the phrase “’attacks’ of mania” and nor did such a description describe my illness. He also said I never mentioned irritability, another word I was reported as saying that’s been added in for good measure.

Later in 2014, another doctor in another city reports me saying the exact same phrase I did not say two years ago. It appears if you mention drug use then doctor’s assumes you are mentally ill; pure prejudice and ignorance. This doctor then adds depression for good measure, reinforcing the mentally ill symptoms I never said I had. It’s like a game of Chinese Whispers with doctors, each hurriedly adding and compounding the initial mistake, ignorantly (and incompetently) ruining the lives of their patients.

From then on and particularly after I am forced on to benefits, everything I do and say is interpreted as though it’s mental illness related, from the amount I say to how quickly I speak to what I talk about (and the inability for ignorant doctors to understand it). I mentioned insomnia, dysphoria and akathisia and there is no evidence any doctor considered that these were caused by my HIV medications, despite specifically requesting what drugs I am taking. This failing is particularly disgraceful.

I at no point complained to doctors about depression or mania, yet because I have an illness they are either unfamiliar with or dislike and because I am autistic so my body language is atypical (causing them to misread me at best and dislike me at worst) they categorise me as mentally ill. There is no objective evidence that I have or have ever had mania or depression or otherwise, and indeed the neuropsychiatrist confirms she made no diagnosis (whilst prescribing medication that would trigger my ME – a fact she even states earlier in her report!). It might very well be that my mood goes up and down but it’s no more or less than before I was unwell, and it has nothing to do with why I am disabled, which if you actually look at the symptoms1 is because I have ME/CFS.

My work capability assessment did not go well. For the interview, I had brought a fit note from July which diagnosed me with mood disturbances and a letter stating that I had been diagnosed with bipolar affective disorder from October 2017, which I had obtained from a GDPR1 request. Neither my GP (Dr Haq) nor the psychiatrist (Dr Mathurine) had the courage, courtesy or decency to state this to my face leaving me to find out in July by reading my documents. I do not have bipolar affective disorder.

I could not understand why a neuropsychiatrist and a psychiatrist both thought I had an elevated mood and it appears it’s because I am autistic. The main reason originally I wanted to look at my medical records is because I thought that hypochondriac had been written there and that would explain why my attempts to access healthcare nearly always failed. But it appears they are treating me badly for an even worse reason. I wrote to my GP’s practice detailing all of this, explaining that the misdiagnosis is because I have ME/CFS, a much maligned illness by medicine, and because I am autistic as doctor’s often misread our mental states. Writing this letter set off my ME meaning that there was no possibility of me being well enough in time to start university this September, putting my life on hold because of medicine for yet another year. I deregistered from my GP in disgust. The only positive to come out of it is my near certainty that I would be diagnosed with autism and to finally have an explanation for medicine’s poor treatment of me.

With these documents in hand, I had felt quite confident before the assessment because I thought I would score 15 points again because although I was much improved since last time, I still have essentially the same issues. However, the assessor I got seemed much more hostile than the previous one and I began to feel anxious. I tried to explain the problems I have been having with the NHS but she kept referring to self-diagnosis and how these hold little weight. I began to regret my policy of “just-in-time” anxiety as in this case it appears to have been “just-too-late”.

I said I do not have bipolar affective disorder yet she asked if I had taken antipsychotics and I felt the combined force of the state’s boot on my face. I said that they would have set off my ME/CFS and that my intolerance and sensitivity to drugs is written throughout my medical record. She asked why I had not been tested for ME/CFS and got a proper diagnosis (showing she knows nothing about ME/CFS) and I told her that I have been traumatised by the NHS and in any case I have tried repeatedly but I get nowhere as I am now in the mental box so they no longer listen to me (not that they listened to me before).

Despite me telling her about PEM2 and the issues I have with concentration, she asked why I had not gone to university in September. I kept stressing the mental fatigue, brain fog, headpains and concentration issues yet she did not seem to be listening. She asked what time I got up and I said 3 and she asked if I went back to sleep and it took me two days to realise she thought I meant 3am not 3pm. Then at about 45 minutes into the consultation she started asking about how I got to the assessment centre and I told her I walked and it had taken about 1 hour 45 minutes. I then started to internally panic triggering emotional and sensory overload causing dissociation because as I have no physical disabilities then I would fail my WCA forcing me into destitution and homelessness as I am unable to work. I would not survive on the streets being autistic and having ME/CFS so it would essentially mean death. I am writing this because I still fear that to be the case.

I told her in the interview that I was dissociating, I had this intense urge to escape, but she said she was nearly finished and carried on. The only word I can use to describe how I felt is violation. I feel violated at having been forced to continue in an intensely vulnerable state whilst I was dissociating and would describe it as like being tortured. I felt like I couldn’t control my facial expressions and that it was stuck in a grimace. I had to read her lips so I could understand what she was saying as my ability to process auditory information vanished. I was not capacitous.

When I left the interview I was very distraught. I remember tweeting that it had not gone very well and I felt intensely anxious and fearful. I thought that was it I am going to have to kill myself and indeed when I got home I started writing a will. As I walked home past Picadilly Station and parallel to the Ashton Canal, I passed the Urban Village Medical Practice, one of those new city modern practices with a large NHS sign on the side. Looking at that sign with those three blue letters on white background I felt nothing but disgust and betrayal.