The Perfect Storm

I received a tweet the other day from a friend, sending me a link to a piece of research information that I was more than happy to read. They have at last debunked one of the so-called “cures” for MS. For me, it was further proof that research papers really shouldn’t be put in the public domain. The article was published in the Lancet and following research paid for by the MS Society in Canada, on CCSVI. If you haven’t heard of it, it was a theory that blocked or narrowed neck veins to the brain might have been the cause. It has led to many people paying for expensive operations to be done, some claiming really good results, but many didn’t. The new research showed up something that had been totally ignored in the original, it’s not just people with MS, who have narrowed veins, and are totally symptom-free, in fact, 50% of those in the three groups they looked at. I fully understand that the publishing of medical research is really meant of the medical profession, but it is no longer staying there.

To me, false hope is worse than no hope at all, and this, is just one of far too many false hopes, that I have heard of in the time I have been diagnosed, and not just false hope for MS, for many, many conditions. In some ways, they are actually worse than the charlatan cures, as these are backed by well-respected organisations, with impeccable pedigrees, not someone with shiny shoes and slicked back hair and a dollar sign over their head. We all need hope, it’s almost a vital ingredient for a good life. I just wish, they wouldn’t publicise anything, that isn’t available today, tried, tested and rubber stamped, as I have spoken to too many people, distressed because they can’t afford the treatment they believe will save their lives. You just have to take a look at any of the funding circle websites, to see thousands of people, trying to raise the cash need for this or that treatment. Many are for well-recognised procedures, the fact they are there, is a different subject, but many are there on a wing and prayer. They would be better off spending what every money they have, just on living a happy life with those they love, for as long as they can.

I know it is up to us, what treatment we put our faith in. I guess it’s slightly different for me, as I have been told there is nothing, not even any of the disease modifying treatments already used for the treatment of MS, that will work for me, due to the form of MS I have. When you have been told something like that, you initially go through the disbelief. Yes, I searched in the hope of finding something somewhere, but when you come up against enough brick walls, you accept. I used to read every new discovery, but every single one I read always had somewhere in it, that it was only suitable for relapse-remitting MS. The odd one includes one of the main progressive forms, but none PRMS. I used to question my Neuro about them, but his answer was always the same, it’s not suitable for you. Now, well now I don’t read them, unless, someone sends them to me, and some do. When I do read them, though, I don’t look for a cure for me, I look for a cure for those to follow me, those who might at this second, be having their first symptoms. It is a fact, that all new therapies and drugs take testing, long drawn out testing. Nothing, even a new compound of aspirin, finds it way onto the market, without years of testing. Years, I don’t have.

There is one piece of information, that I want to hear far more than they have found a cure. I want to hear, that they have found the cause. I hate unsolved mysteries, the play on my mind, as I can’t believe that there is anything that can’t be solved, eventually. Personally, I have always believed that it will not be one thing, not just a virus, or just the locations it appears in, it will be a complex combination, that when the unfortunate person has collected all the pieces, they become ill. If you read from the start of my blog right through to today’s, you will find my opinion of some of those factors that build up to the perfect storm. There is one thing I am convinced of, though, they won’t find the answer until there is a universal questionnaire, that covers everything and anything, that could even have the slightest possibility of being involved. I have taken part in many online research questionnaires, in which there is always one glaring problem. They give multiple choice answers to check off, but in almost all, the answer I want to give just isn’t there. The second I find that, I know the research is flawed, and what I am actually filling in, is someone’s questions that they only want answers to, that prove their own personal theory is right. Once they do have a true questionnaire, it has to be given to everyone who has MS, regardless, of which form, and that the importance of it is truly stressed, so that those who usually wouldn’t take part in such things, will. Then, and only then, along with all the medical test results from their diagnosis, will they have a true picture, of what we the people living with the condition, really feel, think or believe. With conditions that can’t be diagnosed just by looking at the simple things, like blood and DNA alone, they are never going to find the answer. Running tests on a handful of people, have failed and failed again, so why keep repeating the same flawed process? Although, I am against postmortiums for natural deaths, these too, might be needed. I also believe, that it isn’t just MS, that would benefit from this approach. Yes, it’s time-consuming and, therefore, expensive, but if they want to really find the cause, or fully understand anything, they have to have the full data, to start with. Unfortunatly, until there is a way of doing all this for pennies, I believe, the causes will never be found.

The other day, I wrote about my thoughts on changing my pain control meds. Well, I have just spoken to my GP about the tablets I am on, and what I was hoping he would agree to. It appears, that the pain clinic was talking rubbish, I am already way above the upper levels of Gabapentin, so that can’t be increased. What we have discussed and agreed on, is that I come off the Amitryptiline and change over to a newer tablet that should have a better effect. Because I was reluctant to just do a straight swap, as I am aware of the withdrawal effect, I am going to take a staggered combination for one week then drop the Amitryptiline totally. Of course, in the time, it has taken me to speak to him, and write this, I’ve forgotten the name of the new drug, when I know, I will let you know. If at any time, I feel it’s not working for me, or the change over is too dramatic, well I will just go back to the Amitryptiline. If it fails in any way, well the only other option is for me to take an increase in Morphine. He thinks, from what I have told him, that I need to increase my current 70mg twice daily, to 90mg, but we’re not going down that route yet. I told him how many boosters I have been taking and he isn’t at all concerned about it, as he said, “That’s why I give them to you”. I don’t know what it is, but I doubt that I will ever be happy about spending my life on Morphine. I don’t even have a logical reason, that I am so against taking more. I can only assume that there was something I either read or heard, in the past that’s tucked away in my brain, just saying “No, don’t do it”, but I have no other choice.

 

Please read my blog from 2 years ago today – 07/01/2014 – Chipping and Changing

We have a large gold fan in our living room, it’s on the wall in the living room just above the sideboard. Back when the room had Christmas decorations filling any space large enough to take them and even the odd one…..

Mutli national lies

I did something stupid yesterday. You know one of those things you have promised yourself over and over to never do again, but you do. Thanks to twitter I came across a survey to fill in about MS and our care, it was being run by the University of London and I thought, well why not? I should have stopped there and actually answered the question, I didn’t. If I had thought I would have remembered all the surveys that I had filled in the past. All those pages of annoying questions that bear no resemblance to the real world that I live in. I should have given up on the third question and left it there. But I had answered the easy ones, my age and my sex, the next should have been just as easy. What type of MS do I have? They had supplied a drop down and surprise, surprise, the list didn’t include PRMS. Once again the 5% of us who have this form were totally ignored. The fact it was a British site should have warned me as even some of the British MS sites ignore us as well. It was down hill from then on, the questionnaire had clearly been put together by people who don’t have the condition, but had possibly read a book. They listed drugs as though there were no other options, or that it was even possible that some of us are quite simply untreatable. They also asked questions about symptoms as though they have totally isolated reasons and impact. For example when it came to mobility, they didn’t actually allow for things like weakness, fatigue and pain can affect our mobility, not just our balance. That not all of us can use wheelchairs without assistance and if you don’t live in a house with flat access to the street the NHS won’t give you a powered chair. Almost every question was twee and irrelevant to the real world that the serious end of MS brings with it.

I remembered the first time I filled in such a questionnaire once again I was inspired by the idea that I might be able to help build their picture of the condition. I went in filled with good will and came out wanting to kill someone. On that occasion, I took the time to write an email, filling in the holes they had made and letting them know all that I could tell them. The reply I got back basically said that everything I had added was irrelevant to their study. How can anyone who is looking to help and actually has the condition they are looking at have any irrelevant information, when answering their questions? I was giving them information which fully answered their questions. I can only come to the conclusion that they already had their results in their heads, or worse still already complied and therefore only wanted people who agreed with them to fill in the form. This is something I have come across before, especially with people who are looking for funding for something as they have to fit set criteria. To find that in a period of about 10 years, that nothing has really changed out there, was truly disappointing. It is hard to believe that people working in the field still don’t want to truly understand the condition and it’s real impact on all our lives. Is it any surprise that there are people around the world who are ill and not getting the treatment, support or care that they really need. Anyone who is putting together surveys right now are the very people who will in the next 10 years will be supplying some part of the system and they will be getting it wrong. Sorry if that upset you, but that is the truth as all business models are set up on the back of work like this and unfortunately health is now a business.

In my last job, I was responsible for all the analysis on every area of the company, right down to the actions and results of individuals. I often found myself the hated person in the boardroom, as I didn’t care who’s baby it was that I was tearing apart, I had to tell the truth. You have to be a strong person to sit there and tell everyone that they are getting it wrong. I was in my late 30’s and early 40’s when I was doing that job, I can’t imagine how a university student would feel facing just telling their peers that the structure isn’t covering everyone or even every form of the condition, far less their difficulty in then having to tell their tutors. The flaw in the machine is often found to be in it’s very design and I can see this one is potentially huge and not just affecting studies into MS. It was one of the things that I actually changed in the company that I worked in, I refused to use outside data as a model. People had already fallen into searching online for similar work, then using it as the base to their work. Not one person had thought about it, they justified it as coming from a university, I through it out based on the very same reason. As a company they didn’t even employ people under the age of 25 in any other role than admin, yet here they were using date produced by people even younger. I can see without a doubt that medical companies, be it the NHS or even individual doctors, will use this otherwise expensive to produce data, as the absolute truth, if not fact. That first survey I completed 10 years ago, that I could drive a bus through blindfolded, will without a doubt have been used as a model over and over again.

I personally, don’t trust figures of any sort, if I haven’t seen the data behind them and verified the thought process that led to them being collated, even then I harbour a healthy doubt. All data can be spun, in fact, many people are better at spin than they are at basic arithmetic. I don’t even trust the banded about figure of 5% for the number of people with PRMS. Who produced that number? When so many different medical bodies don’t even seem to believe it exists, how can they say if it is 5% or 10%, or even more? Without a doubt, there are people out there who believe that they have either PPMS or SPMS who, in fact, have PRMS. Right now they are throwing drugs down their throat that will do nothing other than poison their system. They might even themselves not believe they are, working but who are we to argue with those great gods the neuro’s. Tell them, fight with them, not your health and they might just wake up. I find it more than a little worrying to think that my future and the future of others with my condition could come down to a group of people who don’t even know we exist. That is a battle I don’t know how to fight, especially as no one really wants to listen to those who muddy the water. It won’t be until someone high profile developers PRMS and is treated incorrectly that our appearance in the world will even be noticed.

Here in the UK the future of the chronically ill is being changed. Some of the things our government are doing, that even as a disabled person, I agree with, some I don’t and few actually worry me. I rarely talk about politics as they are a personal thing that is easily miss read without the full picture of someone’s life, influences and experiences. It is hard without all the changes intended being laid out in front of us, something that won’t happen for a long time. Right now, though, it looks as though they are working on a “one size fits all” system. After many years of illness, I can say without a doubt, it doesn’t work. It doesn’t even work within one condition, so how could it work from diagnosis to death. I know that right now I could be claiming more financial help than I get, but I don’t need the help it is intended to pay for, so I don’t. To me, just being able to honestly tick the box, isn’t enough. If everyone was that honest, we probably wouldn’t be facing a future where getting anything outside of the “fit all”, will be almost impossible. Or the fact that the “fit all” is going for some to be less than it is right now. It also looks as though unless you have the strength to undergo assessment after assessment, interview after interview and more forms than required to wallpaper your house, that help will not be granted. It sort of feels that they are hoping you will die and they don’t have to give you anything. I could be totally wrong, as I said the full details haven’t been given yet. For all those facing this uncertain future, wondering how on earth the government believe we can exist this way, look no further than that survey you filled in years ago and didn’t complain when you could see that it was clearly flawed.

There is one last problem that surveys supply and is often missed, especially when it comes to health. A year from now, I along with millions of others, probably won’t be well enough to fill in anything other than our beds. We won’t exist at all in their data, nor will our needs and our care requirements. Without any fault in the questions, that fact alone makes all and any result flawed before the first question is even answered.

Please read my blog from 2 years ago – 25/08/2013 – And so it is evening

I am loosing time again today, not minutes here and there but huge chunks of it, how on earth did it get to 10:14 and here I am just starting my daily post! Well there is little I can do about it now, but it is always frustrating to loose time…..