No Change

My bestie and I had a full on moan fest this morning about our shared M.E. experience.  She has been ill for 22 years and I have been ill for 24 years and in that time nothing in respect of diagnosing or treating our disease has changed.  Absolutely diddly shit.

Actually, that’s not strictly true.  Things have changed, they’ve just changed for the worse which isn’t the goddamn plan or what we ever expected would happen.

I know many of you think I’m negative, cynical or plain old disinterested when the latest research breakthrough bounces around the world wide web, but it’s simply that I’ve lived through nearly a quarter of a century of this stuff and trust me when I say it all quietly fizzles out never to be heard of again.  Little pieces of the puzzle have been emerging for years, but like I said to my friend “all disease has one underlying cause.  ALL disease.  We know what Alzheimer’s and Multiple Sclerosis looks like on a scan.  We know what cancer looks like in a petri dish, even though different cancers affect different organs and appear for different reasons.  We know what diabetes looks like from blood tests.  That’s because all disease has one biological cause and despite 30 years of looking we’re still nowhere near finding the cause of M.E.  Absolutely nowhere near” which is a bloody depressing thought.

I spent 14 years on the board of an M.E. charity and during that time nothing changed.

I was an expert patient, representing severely affected sufferers in the setting up of ME/CFS clinics around the UK 17 years ago but it was all for nothing.  My voice wasn’t listened to, and the only treatments offered by the Clinics were ‘Mindfulness’, CBT and physiotherapy none of which made a shit of difference to my friends who were bedridden, being tube fed, in excruciating pain, paralysed, having seizures and unable to speak or tolerate daylight.  The situation hasn’t changed in any way during the intervening years and my local ME/CFS Clinic has since closed.  There is still, all these years later, no effective treatment for any aspect of M.E.

I took part in the PRIME project, and the CHROME project which followed severely affected sufferers over a decade – the information from both seems have disappeared into the ether.  I took part in the Lost Voices book, which told the stories of severely affected sufferers but was only read by patients, and some of my friends took part in the Voices from the Shadows film (Jen Brea’s Unrest isn’t the first great film to be made on M.E.!) which caused a stir at the time and then was very quickly relagated to history.

I did numerous media articles and interviews alongside many other sufferers and, to an extent, the publicity worked in as much as at least most people have now heard of M.E. but it’s still the butt of jokes, we’re still thought of as lazy idle scroungers and all the lay public really know about M.E. is that it’s an illness that makes you feel tired a lot.  Yeah, that’s it – spot on.  Mind you, the situation really isn’t helped by the myriad of patients who appear in the media with stories which tell how they’ve been “really ill” for 2 years, but then ate a paleo diet and took some probiotics and now they’re back at work and feeling great.  Yeah, thanks for that publicity from people who clearly didn’t have ME to start with.

The biggest change I’ve seen over the years is the watering down of the diagnostic criteria, which makes me so angry I could spit and the introduction of the name CFS, which trivializes my disease.  I am not chronically fucking fatigued – I nearly died for god’s sake and no-one dies from being tired.  The diagnostic criteria no longer stipulates that “activities of everyday  life are reduced by 50%” which means people can now work full time and still have an ME diagnosis, a situation I find unbelievable, and “fatigue” has replaced “malaise” as the number no.1 critiera.  Really?  Fucking REALLY?!  I’ll make sure to tell my throat that when I’ve spent too long on the computer and suddenly feel like I’ve got tonsillitis (my M.E. warning sign that I need to rest) or when I start to speak like a stroke patient because my brain has forgotten how to engage with my mouth.

We’ve had enough time, now, to have made some kind of breakthrough but it hasn’t happened.  In the UK the psychiatric lobby is still going strong and the only official treatments offered to M.E. patients are graded exercise and cognitive behavioural therapy which are about as much fucking use as a chocolate fireguard.  Where has the decades of research and lobbying and activism gotten us?  No-where it seems.  We were fighting the psycho-social view of M.E. back in 1996 and we’re still fighting it more than two decades later.  When is it going to stop?

The answer to that question, I told my friend, is not until there is a diagnostic test for M.E.  It’s the only thing that will ever shut the UK’s psychiatric lobby up or convince the public we are genuinely and physically ill.  All the protesting in the world is a total waste of time, money and energy because until we can prove that M.E. is a physical disease by some kind of diagnostic test no-one is ever going to believe us, no matter how loudly we shout.  And being as though we are no-where near knowing what causes M.E., let alone having a simple diagnostic test, we might as well all just sit in our beds with a brew watching the X Factor.  Which is precisely what I plan to do now I’ve got that little rant off my chest.

 

 

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3 thoughts on “No Change

  1. lyuba

    Hi Jak,
    I messaged you previously and felt I had to respond when the above ”rant” landed in my inbox.
    I absolutely feel your frustration when you say that everybody seem to think that the main symptom of this condition is tiredness… TIREDNESS!! (include all swear words you can only imagine here and some more!) and that some therapy can help. However, it doesn’t matter. You HAVE to keep fighting and trying diffrent things despite the all around ignorance.
    I listen to my body carefully and not only for warning signs of feeling extremey unwell, but also for the precursors of feeling better-ish. I went to a ‘Free From’ show in Liverpool this last weekend with my children. I was only able to go because I have been on prednisolone for the last 5 months otherwise I would have been bed bound. It was a very long day and the following day I was half dead. This is just how I always feel after any physical activity or even mild stress. I sometimes think of myself as a greenhouse plant that needs carefully controled conditions not to die. It (me) can even look ok and very deceptively healthy if all criteria is met. The total inability to understand just how fragile this balance is applies to all people that I came across. Anyway, in the evening I have managed to get to the chemist to collet my prescriptions and took antihistamines (liquid cetirizine) x4 daily dose. Within half an hour I started feeling much better. I am not saying that I am symptom free after taking antihistamines, but it helped a lot.
    Just to be clear I do not believe that I have histamine intolerance due to enzyme deficiency as I had one of them tested (DAO) which came back normal. There is, of course, a chance that it might be an MHT issue which I am looking into. I have a diagnosed Crohn’s disease and severe asthma which are autoimmune conditions. I also react to practically everything including stress, physical activity, heat, cold, sounds, smells, lack of sleep, medications, foods, alcohol…life in general doesn’t agree with me very well. My acute reactions are also not in my head, but for everyone to see: allergy like urticaria, tachycardia, severe palpitations, asthma attacks, facial and hand swelling and redness, high temperature etc.
    I have discovered recently that I am lactose intolerant (or possibly have IgE or a non-IgE mediated dairy allergy or both which doesn’t matter as I have excluded ALL dairy from my diet since to make life easier) possibly as a result of my Crohn’s disease. While trying to exclude the dairy I have found that many tablet antihistamines and prednisolone contain lactose. Liquid citirizine doesn’t. There is also prednisolone available that is lactose free. This lactose intolerance issue can be relevant to people with mast cell issues as lactase is produced in the digestive tract. The lack of lactase can easily be a result of long term intestinal inflammation due to reactive mast cells.
    So, in summary, after being sceptical about how much antihistamines can help and having tried them for years, it appears that larger doses do help. I sincerely hope that it might help somebody else.
    I will also do my best not to overdose on it now with all this excitement and expectations…
    I wanted to end here, but remembered an interesting perspective on this condition that I have been focusing on recently. Stress. I have always reacted very badly to stress. My pulse is never below 90, and regularly 120 to 160. Mast cell degranulation in stressful conditions is well documented from Dr Afrin’s speculation on self combustion (this made me laugh not because it is not true, I actually believe he is onto something here, but just imagining my GP’s face if I were to tell him that I am worried I might self combust…) to Dr Theoharides article on neuropeptides and their role in stimulating mast cells.
    Recently there was a lot of talk about a gadget Doppel which tricks your body into ‘thinking’ that you are not stressed by having the fake normal ‘pulse’ on your wrist. I will be trying this gadget when it becomes available again. If neuropeptides trigger stress conditions in our body and a whole chain reaction of events, perhaps breaking up this feedback loop of stress response can lessen the impact on mast cells. Dr Theoharides suggests that retraining how your body reacts to stress might be beneficial. I am sceptical about how actually doable it is, but a gadget like Doppel might just help.
    All the best
    Lyuba

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      1. lyuba

        Hi Jak,
        It is interesting that you think that ME is caused by issues with mast cells as this is what I was thinking for a while too.
        I am looking into the possible reasons of such mast cell malfunctioning and I feel that permeability of our digestive tract might be one of them. This, of course, will not apply to people with alpha tryptasemia or perhaps to some forms of mastocytosis. It makes complete sense that our immune system becomes overreactive once it is breached. It also explains why people with this condition react to various foods (low and high histamine) in the absence of IgE reaction. This can also account for an increased number of mast cells as it is seen even in infectious diseases like H.Pylori. There are many possible causes of gut permeability, but the one that is lesser known is high lectins in our diet. Right now I am reading a book by Dr Gundry a cardiologist, who seem to have a comprehensive and very plausible explanation on the topic.
        Hypermobility seem to be always mentioned in relation to MCAS. It might be irrelevant (although everyone in my family is affected) as it is very common and we humans are programmed to look for patterns, but in theory poor elasticity of our digestive tract could potentially lead to the compromised integrity of our digestive tract’s mucosal layer, permeability and immune system disfunction and even higher numbers of mast cells which could explain familial hypermobility connection and mast cell issues.
        Just something to think about.
        All the best.
        Lyuba

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