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“Ice Cream & Hypothermia” revisited + a chilling NICE consultation process

November 19, 2020

FROZEN (Kazakhstan 2019)

NOTE: this post runs at 2270 words. It falls naturally into two sections of approximately the same length. 

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The blog has been rather quiet for a while. While my day-to-day work does not stop, my ability to write blog posts is necessarily limited by health issues.

In recent months, I have had an increase in pre-existing non-ME health problems as described in this post from 2012. The full text (1200 words) of that post appears at the end of this one. The current problem is being addressed.

Meanwhile, a few words about the National Institute for Health and Care Excellence (NICE). Much has already been written elsewhere on this. Below is my own short take on the subject:

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CONSULTATION STAGE OF NICE’S “GUIDELINE IN DEVELOPMENT” PROCESS ON “MYALGIC ENCEPHALOMYELITIS (OR ENCEPHALOPATHY)/CHRONIC FATIGUE SYNDROME”[sic] 

Let’s just get the tedious terminology out of the way:

  • “The National Institute for Health and Care Excellence (NICE) is an executive non-departmental public body of the Department of Health in England…which publishes guidelines [on matters of health and social care]…” (Wikipedia)
  • “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” is subject to around twenty different case definitions. For the purposes of this blog, it is ME, the complex neuroimmune disease which I have lived with since 1981. A good source of information about ME is available here.

In 2017, NICE began the process of updating the existing guideline on ME, originally published in 2007. The existing guideline is dangerously inaccurate and outdated. It remains in place until the new one is published.

After several postponements, the draft consultation documents were finally published on 10 November 2020. This is followed by a six-week consultation period, concluding on 22 December 2020. The final publication date is expected to be 21 April 2021.

With my health in its current state, I haven’t yet been able to read all of the documents. The observations below relate to the draft guideline document unless specified otherwise.

It is important to remember that the new guideline is a draft for consultation purposes and not the final version.

A brief scan of the relevant available information reveals the following points of significance (this is just a snapshot: there are many others):

  • NICE has confirmed that there is currently no treatment or cure for ME. A shocking admission for an illness which has been documented for nearly a century. That the focus of this guideline remains on management rather than treatment for a longstanding illness of this severity is completely unacceptable.
  • Graded Exercise Therapy (GET) should no longer be recommended as a treatment for ME patients. The scandal here is that it was ever offered in the first place when it clearly caused severe deterioration and, in some cases irreversible damage, to ME patients.
  • There is still an emphasis on increasing activity as a form of illness management. This leaves open the possibility of further damage from ill-informed therapists at the so-called specialist CFS/ME centres.
  • Cognitive Behavioural Therapy (CBT) remains as a treatment option but downgraded to a supportive therapy of choice by the patient, rather than an attempt to brainwash very sick patients into believing that they’re not really ill, they only “think” they are. This still leaves open the possibility of continuing inappropriate interventions by misguided CBT practitioners.
  • Pseudoscientific therapies such the Lightning Process (LP) are removed as treatment options. Again, the scandal is that the LP was ever considered appropriate at all. Some ME patients have described how they were encouraged or even coerced into paying hundreds of pounds to take part in a process which many then found to be exploitative and abusive.

My assessment so far

A couple of useful steps forward alongside a lot of worthy but anodyne waffle about proper support and social care for ME patients.  Great in theory but how much will actually translate into better practices, improved conditions and – above all – serious biomedical research on a scale which properly reflects severity and disease burden?

The section on research recommendations is – to put it bluntly – pathetic. However, there are some pretty damning observations in the evidence review document.

The challenges and stigma attached to the illness are acknowledged in the NICE draft. However, my view remains that, until the decades of reputational damage experienced by the ME community are addressed by the institutions which have enabled abusive behaviour towards patients, then little will actually change on a day-to-day basis. I have written about this in my series of posts from 2019 “Changing the Narrative” and my position has not changed since then.

Hopefully I will be proved wrong after the final version of the guideline is published in 2021.

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A note on “Post-COVID-19 syndrome”, also known as “Long Covid”

There has been much discussion in recent months about Post-COVID-19 syndrome or Long Covid as some prefer to call it. This final scope document from NICE, issued in October 2020, sets out the current position in England, Wales and Scotland.

ME is frequently characterised as a post-infectious illness or disease. Some Covid “long-haulers” have already been diagnosed with ME. More may follow. The extract below is taken from my comments in a group email discussion from September 2020:

“My guess is that many people who are experiencing Long Covid will eventually recover, given the right management, although it could be a long, hard road. Eventually, there may be a small but significant number of Long Covid patients who meet the criteria for ME (as with SARS-COV-1 and other viruses), including those diagnosed with CFS or similar…..This is a “spectrum of disorders”. Nevertheless, I’m unconvinced that it is a “one size fits all” situation.
For my part, I have enormous sympathy and concern for the Long Covid community and I am happy to do whatever I can to advise and assist. However, my primary focus will always be on the continuing challenges faced by the international ME community. In April this year [2020], just after worldwide lockdowns were imposed, I wrote this in an email exchange with a director of one of the ME charities: 

It’s possible that more attention will be drawn to the long-term effects of post-viral conditions but it will take some time for that to become apparent, once the current crisis has abated. It’s also possible that ME-specific issues will [yet again] get sidelined in the scramble for resources in an increased awareness of general post-viral issues.” 

And finally, lest we forget: “The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019 

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Ice cream and hypothermia: a very personal story

NOVEMBER 1, 2012

When I was a child, living in Australia, I needed to have my tonsils removed. I was nine years old; I had been ill for quite some time and was very frightened at the idea of surgery. Everyone said to me that it would be fine and I would get lots of ice cream afterwards to cheer me up and make my throat feel better.

I had the operation. I was in hospital for four days and caught a cold because the nursing staff insisted on leaving a window open next to my bed. I felt terrible and my recovery was slow. And I never got any ice cream.

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We have just had our first bout of cold weather here in London. I have come to dread this time of year as I now have a tendency to become clinically hypothermic in a very short space of time.

I have been through a total of eight operations in my life so far. Five of these took place between 2004 and 2008. The second of those was in February 2005. I was admitted to hospital in London for the umpteenth time with acute, unexplained symptoms, on the day after the funeral of my closest friend. After a week of being unable to take in any food or liquid, I was very weak and in great pain. In desperation, my consultant (whom I knew well by this time) decided to open me up for the second time – and this wasn’t the last time he had to do this. He emphasised that I might not survive the surgery.

The operation turned out to be simpler than anticipated but I experienced severe surgical trauma because of my weakened state. My body temperature plummeted to around 31 degrees celsius (normal body temperature is around 36.8 degrees). My heart was doing some strange things too. I began to regain consciousness at this point and I remember shivering violently and uncontrollably for more than an hour while the nursing staff gradually brought my body temperature back to normal and my heart settled. My recovery from this operation was slow and tortuous. On the day of my operation, the partner of my dead friend checked into a hotel and killed himself. I had been powerless to comfort him in his grief.

A few weeks later, I tried a short walk outside for the first time. The weather was cold and I began to feel unwell quite quickly. When I got home, I checked my temperature as I thought I might be coming down with a post-operative infection. To my surprise, it wasn’t high: it was low – hypothermically so (ie. below 35 degrees) – although I had been outside for only a short time.

And so it has remained ever since. My personal thermostat was blown. I am mostly OK in temperate climates but even the generally moderate temperatures of a normal British winter are enough to cause me significant problems. If I am outside for more than a few minutes, my core body temperature drops very quickly. It can even happen inside, if the heating is inadequate.

I have discussed this problem with various doctors. No one can explain why it happens and actually no one is very interested, as I’m clearly still alive and apparently functioning “normally”. The fact that I have to manage this problem throughout the winter months by only staying outside for very limited periods of time – well, that’s just too bad. But each time it happens, a little more of my precious energy is sapped and my already restricted life with Myalgic Encephalomyelitis (ME) feels even more depleted.

If I stay out for too long, I begin to enter a catatonic state whereby I lose awareness of what is happening; at this point it can become dangerous. I then have to very deliberately monitor myself and everything that is happening around me and get myself back into a warmer environment as quickly as possible. No amount of extra clothing prevents this from happening.

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In October 2008, I was back in hospital for my eighth operation. This was a second attempt at correcting a cardiac arrhythmia, an earlier try having been unsuccessful. After the previous failure, I was paralysed with fear as the first experience had been truly awful and my recovery – such as it was – painfully slow. Yet again, I checked my will and the memorial service which I had prepared three years earlier. And again, my husband and I exchanged our words of farewell.

This time, however, I discussed my situation with the surgeon (whom I shall call “Tom”) and the anaesthetist. It was the same team as in the previous attempt so I already knew them. I explained to Tom about the hypothermia problem and queried the fact that operating theatres were always, in my experience, so cold. Tom confirmed that there was no clinical need for the temperature in the theatre to be kept so low and promised that he would ensure that a higher temperature was maintained throughout the procedure. I also requested that he would stay on afterwards, until I had come round in the recovery room (which is a lonely and terrifying place), so that he could tell me personally how it had gone. He agreed.

Somehow, I persuaded my legs to carry me into the theatre. About three and a half hours later I began to come round in recovery; Tom was there, waiting, as promised. I then did what I always do after an operation and promptly burst into tears, my standard response to surgical shock. I knew that Tom was emotionally reserved and not inclined towards displays of sentiment but I urgently needed reassurance. I held out my hand (because of the anaesthetic, I was still unable to speak at this point). He took it immediately and held it for a few minutes and told me that all had gone well. The comfort which I derived from this simple act of humanity was indescribable.

This operation was successful and I recovered rapidly. I later learned that, despite the fact that the theatre staff were roasting, Tom insisted that a warm temperature be maintained to reduce the risk of my becoming hypothermic again. He had kept his promise.

Since this last operation, I have been left with significant cardiac discomfort but the dangerous condition has been alleviated. I had hoped that perhaps my ME symptoms might also improve as a result but they have actually been exacerbated by the trauma. It had been impossible to evaluate those symptoms objectively in the preceding years because of all the other acute, ongoing problems. I had allowed myself to entertain the possibility that the ME (which I have lived with since 1981) might have improved; however, it was not to be. I now also live with the permanent legacy from so much surgery – including the hypothermia.

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After that final operation in 2008, I was out of the recovery room and back in my own room within a couple of hours. Sarah, the Australian nurse who was taking care of me, asked me if I was hungry.

And so, after forty-two years, I finally got my ice cream.

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3 Comments leave one →
  1. November 26, 2020 19:55

    Interesting to read of your hypothermia susceptibility Valerie. I’ve not heard anyone else describe this reaction as one of their key signs before.

    Although I have never been sure of an actual abnormal drop in my core temperature, I do suffer from what seems to be a very similar handicap to your own. It used to happen that if I stayed out too long and didn’t carry a change of clothes and flask of hot drink with me, as the air cooled down of a summer’s evening, I would become gradually muddle headed and forgetful, and, if I ignored the sign, I would end up in a terribly paroxismal shaking fit that truly felt I would die if I failed to get somewhere very warm, very fast.

    I had a number of occasions where I was caught out while out walking or cycling, as my energy reserves fell and I got colder-feeling (though measuring normal), and, on a number of occasions was ambulanced to A&E. These always resulted in me getting told off for wasting their time with a panic attack, because, by the time I got seen, the very good ambulance heating and blankets had stabilised the shaking.

    I learned to live with it for a number of years, simply by going everywhere by car, and never walking too far from it, and always carrying a rucksack with spare clothes, food, and hot drink. It continued to be a problem though: I can go into a shaking fit simply by breathing cold air when walking or being wheeled from one building to another, and it has happened even when just standing up from a warm bath, and the evaporating water on my skin sends me straight into shaking fits.

    In tandem with this, another steadily worsening sign has been my belly blowing up tighter and tighter with muscular effort. Initially only when walking or cycling up steep hills, this took my breath away, and had me gasping fit to burst my chest open yet still unable to get enough air. Yet oximeter readings remained normal, as did blood sugar, so it was always met with accusations of panic attacks whenever I tried to describe it to medical people–or people in general, in fact. 😦

    It deteriorated to the case where I’ve been largely bed bound for around 10 years, with me being able to be upright and/or using muscles for less and less time, so, at the moment, even sitting in a chair for an hour turns my feet and legs purple and swollen, and my belly blown up like a beachball, so that the flesh is straining to rip away from my ribs. The pressure inside is enormous, and cramps up my back and chest and intercostal and neck muscles. It feels as if my head must get blasted off my shoulders.

    I have to rush to lie down and take painkillers while I wait for the pressure to subside, and my head to clear so that I’m gradually ready to try a bit more. I’m doing less and less though, and, lately, I only seem to be able to get up briefly once every other day.
    Sitting up to use a laptop in bed has the same effect as using my physical muscles too. An hour at the screen, and I start to feel drunk and confused, and cold shin boned.

    I’d guess that you are familiar with these feelings. I hypothesised that a fault somewhere on the hypothalamic/adrenal/pituitary axis might be leading my body to go into emergency shutdown mode due to some mis-set or ‘broken thermostat’, or mixed up signalling, but, suggesting this to doctors just reinforces their smug certainty that they are dealing with a hypochondriac.

    This last couple of years, I started having bouts of purple pee associated with having stood up too long. It seemed that porphyria might be a possibility, but I’ve now had quite high level tests of samples I managed to actually freeze and keep from the light till I got them to Addenbrookes, and a large panel of tests all came back normal, so they seem to have lost interest in me now, and are telling themselves it must be something I ate, though I record everything I eat and they know that really is not the cause.

    Anyhow: sorry for the longer than intended waffle. Just thought you might like to know, someone else might know how you feel.

    Like

    • November 26, 2020 20:49

      Thank you, “Spamlet”. What you’re describing sounds awful and I really do sympathise with you. It does sound similar to what I experience but even worse.

      It does seem that many of us with this type of condition do live with an HPA axis dysfunction which causes thermostatic issues, to a greater or lesser degree. The worst part of it, generally speaking, is that it’s just not recognised or acknowledged.

      Thank you for sharing your experiences and I wish you all the best.

      Like

  2. November 27, 2020 03:01

    One thing you might check as well as your temperature, is your breaths per minute. I was surprised recently, to read how many breaths per minute ‘normal’ people make. My own is often just 4 or 5 BPM but I didn’t know this was a ‘bad’ thing. Nurses are trained to look for sudden rises in BPM, but few take any notice if someone has a low rate and the oximeter reads normal. I asked other on the IIME FB page to check their BPMs, out of interest, and many did find they had low rates, though few as low as mine. I expect this is another autonomic dysfunction sign that would be useful in proving one is not imagining things!

    Liked by 1 person

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