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Where did the year go (I have no idea!) and what has happened?

Well, last year I started to raise money as part of the Just Four Quid campaign. I set up two JustGiving pages (see them here and here) and over the year i have raised £864.00 shared between ME Research UK and The Ramsay Research Fund. With the gift aid added this comes to a massive £1003.62!!  Not bad for a year’s work (with no marathons/bungee jumps undertaken, for obvious reasons) and double what i was aiming for (and I never thought i would even reach those targets). I am so grateful to everyone who has donated to my pages and I am sure that that substantial amount will really help the charities with their work.

The Just Four Quid campaign itself has raised £12,685 at the time of writing, which is way short of the target of a £million in the year, but certainly better than nothing. I wonder how many people it took to reach this target, seeing as if everyone of the estimated 250,000 people in the UK with ME/CFS gave £4 we would have reached the target. I assume it is a very small number who have raised a LOT more than £4, like me. Not that i often did it in the suggested way of saving stuff then donating part of the saving – i simply am too ill to do it that way. I have barely been into a shop, never mind been well enough to shop around, even online. The recent theme of staying in cheap hotels/hostels also is completely unrealistic when you are so ill and there are certain comforts required (not just desired) to make the stay even remotely possible! I wonder if that is why the campaign has not been more of a success; the ones who want to raise money the most are like me, struggling to cope with everyday life rather than having time/energy for extra stuff like the things suggested by Just Four Quid. That said, you have to have a target and the money raised will make a real difference, even if not quite what was hoped for! I really admire “Zonko” for keeping up the momentum and enthusiasm for the project and for raising what has been raised. I certainly would not have considered doing it without her.

Personally it has helped raised awareness and caught the attention of people (friends and family) who had not really engaged with my illness or been able to understand it previously, which is a huge step forward. I feel more comfortable with them now. I also have a sense that i have DONE SOMETHING this year, more than just writing about my experiences and talking to others with these conditions; which is important in mutual support and information sharing, but perhaps not raising much awareness outside the group. Supporting actual research is certainly a step forward, and one so valuable when so little funding is available. The pages are still live and will be for a few weeks, so please feel free to make any last-minute donations if you get the urge!

I did a lot of hard work blogging for ME Awareness Day 2009 – this year I am keeping it fairly simple with a post or two about Fibromyalgia. Looking at last year’s posts, I think they are saying much of what I would want to say again, so feel free to revisit, or read for the first time if you did not see them last year. I was most interested to look at my symptoms picture and to note that I may even have developed a few more this year! That is no small feat (I like to focus on my achievements!) but also I notice that some things have become less of an issue for me (barely any tinnitus this year! yeah!). So, swings and roundabouts…

Last Monday night i went to a talk given by Prof Julia Newton, who is the POTS specialist i have been seeing. The blurb for the talk is:

Standing Up for Fatigue: The Biological Basis of CFS/ME

Chronic fatigue syndrome (CFS/ME) affects approximately two per cent of the UK population, impacts on quality of life and affects a sufferer’s ability to work and live their life. Despite this, there is no diagnostic test for CFS/ME and no effective biological treatment. Julia Newton, Newcastle University, researches the autonomic nervous system, which controls subconscious activities that occur in the human body, such as respiration, bladder and bowel function, and also maintains heart rate and blood pressure. Autonomic dysfunction and particularly low blood pressure, hypotension, are a frequent finding in people with the symptom of fatigue.

(please note that i use CFS/ME, ME etc as all referring to the same thing in this post)

The fact that she is “standing up for fatigue” and trying to challenge the beliefs of the medical profession that fatigue is a symptom of physical illness (which it seems is not taken as a given at all even outside of CFS/ME and medical students don’t even always learn about it! There was a medical student there who said it was not covered at all on her course) is so brilliant for pwME (people with ME). She is so enthusiastic about it and i can’t help thinking how huge the task is that she is taking on. I hope she does not run out of steam!

I was really impressed with her enthusiasm to improve the lives of pwME, by trying to treat certain symptoms and also by researching the biological basis to the illness and raising awareness. I was also impressed by her willingness to talk about the difficulties she has had with getting funding to do biological research specifically on pwME (the Medical Research Council was mentioned), the limitations of the NICE guidelines and the views of those in the “ME/CFS is a psychological illness” camp (which she summarised in such a succinct and direct way that it made them sound so ridiculous i wanted to give her a round of applause! I really wish i could remember it word for word, but it was something along the lines of “that to focus on symptoms prevents the patient from getting on with their lives…” as if  it was so easy that if we could just ignore our symptoms, they would melt away!).

I have not finished this blog earlier partly due to the fact that i was hoping that i would get a recording of the talk to listen to again to refresh my memory of exactly what was said as she said things in really interesting ways and i doubt i can quote verbatim from memory. Unfortunately that has not been sent to me so please do not take anything  say as a direct quote from her lips as it is just my impression of what was said and i don’t want to cause any trouble for her! I may have got the wrong end of the stick as the microphone technology was a bit dodgy and we were not even sat in the same room as she was talking so may have missed some of what was said.

When talking about the difficulty of getting funding for ME research she named who is funding much of her current research: ME Research UK. This was very interesting information for me, as with all the recent debate over Action for ME and other charities and where their focus lies, who they may be affiliated with (eg Wessley & co) and how they are run, it is good to know that this charity are funding all this good work. I would not be getting my treatment if it was not for them as i am part of the research study. Now i know that i can safely recommend them to anyone wanting to support a charity and also can give them money knowing it will hopefuly not be wasted on recommending CBT etc. Hurray!

Hearing her talk about her research really made me realise how early days it is in terms of treatment. It seems that she is treating people with medications to try to build up a solid case before there is any chance of research funding to “prove” that it does work. I even asked a question about this on the night (which made me feel dizzy with concentration and worry that it would not come out right!) and she said it was early days but the message about POTS and it’s relation to CFS/ME was slowly getting through… I can’t help but think it may be quite a while before medication is available to anyone who is experiencing the symptoms i am having. She said that in some other European countries there is more attention paid to low blood pressure and the problems it can cause, but that in the UK it is rarely thought to be significant, and that only high blood pressure is a problem! Knowing how my low blood pressure makes me feel, and how important getting blood to the brain and other organs (like the heart!) evidently is, i am amazed at how basic and backward our medical knowledge can be.

Also on a research note, someone asked if there was evidence for mitochondrial disfunction having a part in CFS/ME and she said that yes there was (we have seen the press this week but she obviously knew before) and that Newcastle is the(?) top place for research into Mitochondrial disfunction in the UK and I think she said that they are building up a bank of blood from people with all sorts of fatiguing illnesses and that she is taking samples from everyone she can in her clinic with CFS/ME to add to it. So she really is involved in a lot of important activity for pwME.

When talking about how to change the views of her colleagues in the medical profession she said:

“Only when you meet someone with ME/CFS do you realise they have nothing to gain from having this illness…”

It shocked me to hear it said, but maybe this view is still prevalent among doctors. How can people who see the reality and impact of  any chronic illness on people’s lives everyday not recognise how ridiculous this notion is? Or how hard it would be for a healthy person to keep up the pretense of feeling too ill to function properly, year after year? No wonder they think we are delusional and have false illness beliefs as you would have to be to keep that pretense up. (I know it has been said before but it makes you wonder who has the mental illness…) anyway, Prof. Newton is wonderfully sane. Her summary of the thinking behind the assertion that ME is a psychological illness sounded so ridiculous that no-one in the room could have continued to give it credit, had they before.

Someone in the audience asked “Who gets completely better?”. Again i was impressed by her direct answer. She talked about the fact that no-one knows as no long term follow up studies have been done. She also at some point talked about the difficulties of researchers using different criteria when choosing subjects to study, which complicates the findings of so much research into CFS/ME. She spoke about heart problems and higher incidence of heart related mortality in other illnesses where fatigue is a main symptom and said, again, no studies done specifically for ME/CFS but that it is likely that it is the same for us.

Usually doctors skirt around these issues and tell you you should get better at some point, they just don’t know when. The ME Specialist has stopped doing this with me now, and this is an enormous relief after being ill for so long, but even he seems reluctant to discuss long term implications of having this illness and living the lifestyle it dictates. To pretend i will ever be as well as i used to be pre-ME is like humouring me and patronising me, as if keeping the hope is the most important thing rather than accepting reality, which is easier to live with in the long run. If hope could cure me i would be cured by now, so it does not rule out improvement to accept that i will unlikely ever be a fully-well person again. To continually compare yourself to that healthy state becomes impossible anyway as after so may years you can’t really remember how it was, or quantify how much you differ from it, other than “a lot”. This has become normal for me and it has to: It would be heart-breaking to remember the freedom so keenly, all day every day.

A woman came up to me at the end who has a sixteen year old son with ME. She said i seemed articulate etc and started talking about it being an illness of high acheivers. (I do not hold with this view. I do not believe i got this illness because i was pushing myself too hard, or because i have a certain personality, although intelligent and a “swot” at school i am not a typical career defined perfectionist, in my opinion, sometimes i can be quite laid-back! My sister was 11 when she became ill and although just as intelligent was not that interested in doing her homework or being top of the class. I definately should have given up work earlier than i did, but the implications of that were so massive that, like anyone (with no diagnosis/proper medical advice), i put it off as long as possible and hoped that i would get better before that point of necessity came). I said to her that maybe “high acheivers” may not rest enough during the early stages of the illness and therefore be harder hit, but i am not even convinced of this really as everyone must just do what they can to carry on when they have no idea what is wrong with them and life as they know it is falling apart… I said to her that if you take any life and randomly stop it at a certain day, compared to an ME-life it will seem that they were either working or playing hard, as most people live life to the full in one way or another. People ask “what was happening at the time you got ill” as there are notions that stressful times can trigger ME, maybe they can contribute, and maybe this is where the “high achievers” come to grief, but so many people live stressful lives, and we all have traumatic events happen at some point so i feel that this is just a fairly irrelevant piece of the puzzle and so much more is going on to cause this illness.

Anyway, so the other thing i was thinking after she said this about the high achievers and also wished i had said was that it is another way of making it our fault that we a) got ill and b) continue to be ill. As if you are saying “If you didn’t want to be well so badly so you could get on with your high achieving lifestyle you would not still be ill. Just relax into it/learn your lesson and all will be well.” yeah well, i have looked into every cranny of my psyche to see if this is true and i feel it is not. These ideas only make us have to do more work: The amount of emotional work we have to do to cope with this illness and the devastation it wrecks on our lives is immense, naturally, as with any chronic illness; but added to that are the things we are told about our illness that somehow mean we have to look at ourselves, our personalities, our past histories and traumas, to search desperately for some reason or meaning that we are told must be there and making us ill (or just think we are); never mind all the work to understand the illness (as best we can, partly to defend ourselves), our bodies, the politics, the research being done, work out who are the good guys (ME charities, insurance companies, employers and medical professionals) and who is just humouring us while thinking we are not really ill at all.

To have a doctor say definitively that they see ME as a real and physical illness is a breath of fresh air. I can now go into her clinic and feel sure that i am being taken seriously, and that i can trust anything she tells me or advises me to do to become well (even if it does not work it is based on her expertise and knowledge and worth a try). Even with the ME Specialist i have not always felt this. He and his team have often fudged over the issues regarding psychological/biological debates, saying it is a combination of factors blah blah, go home and do some pacing and try to change your thinking patterns in a CBT way and then you will improve… (but i didn’t improve despite trying very hard to follow their advice, so i end up feeling a failure as i am obviously not doing something right… yes, more emotional work for me, very draining for a fatigued person!). I am not saying that all the pacing and “thinking” is a waste of time, it just seems to be being sold as more than it is: coping strategies). I think in actual fact the ME specialist has his head screwed on the right way and is just bound by the NICE Guidelines and other bureaucratic things to have to play along and not rock the boat too much, he probably is disappointed that he cannot do more for us patients, but not knowing how your doctor feels deep down about your illness is unsettling and is not a good basis to building a relationship of trust or “treatment” (if there was any!).

So that is all I can manage to say for now, i have not said much about the actual lecture, more about what others said and my own thoughts, but i did not learn a lot during the main lecture as i have POTS and know all about it already, pretty much, and she was starting from the basics.

ME/CFS Awareness

ME/CFS Awareness


February 2020
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