A weird free hotel (that checked your BP every four hours – awake AND asleep): My recent experience of the NHS.

Tower to incinerate the waste at AddenbrookesHospital
Addenbrookes fixed my bimalleolar (broken ankle) very well

Happy 2020!

I’ve been away from my website for some time (some of which was under my control some of it less so).

I’ve been taking collagen most days especially while my broken ankle heals.

A bimalleolar fracture wasn’t talked about on the ward (many and fairly varied painkillers might have interfered with my memory at the time.)

Both bones in the calf required pins to stop the healed bones in the future growing unevenly. General anaesthetic and an operation (might also have got in the way of perfect recall). It was mentioned on the consultant’s rounds.

The discharge notes were far drier and used other long words.
This is the second week of my second cast (wasn’t mentioned).

Here I’d like to update a previous post about collagen. I hadn’t posted (my mistake) about collagen but ginger!

Both good for a body but in different ways.

With collagen we need to take vitamin C.

Preferably liposomal as it gets into our cells better than the traditional ascorbic acid (which can result in a gyppy tummy as the unabsorbed powder can leave the body quickly).

SO many processes are helped in a body that has enough vitC. Many processes won’t take place in a body deficient of vitC.

Discovering scurvy and it’s treatment helped modern day drug trials take shape!

With enough vit C the body makes energy better so working out ends up with energy getting produced and used better.

Vit C’s a good allrounder

It helps our bodies absorb iron, fight off disease by boosting our immune systems and hair and skin do well too. ODing on vit C I understand requires some determination!

I first started with collagen a few years’ back to keep my body feeling younger for longer.

Collagen works best and is best absorbed on an empty stomach (who knew?)

I’d been taking the powder sprinkled on my food (not being a smoothie fan) Collagen could minimise the menopause too.After after reading more about collagen I now have it b4 breakfast with green juice (no bananas) and liposomal vit C.

I choose the fish derived collagen out of personal choice rather than the beef derived sort but I believe both deliver a version of the jelly I I used to get from a homemade chicken stock using Sunday’s roast chicken bones?

Enhancing skin elasticity will hopefully ward off wrinkles but it didn’t work very well for my  easily snappable ankle!

I imagine that these two products together are doing for my bones what Lion’s mane mushroom powder might be doing by regrowing the damaged myelin in my brain and spinal cord.

With the help of ‘my IT guy’ (husband) I look forward to being in more regular contact.

The wonder of the NHS will form a future post

High Cholesterol… Says Who?

High cholesterol… according to what measure?

Don’t leave before you read the last few lines! My lipid profile was checked when I was going in for other blood tests at the doctors. The GP surgery pointed me to a website to read as I had ‘high cholesterol’. My level could be considered borderline high according to some measuring, apparently.

My cholesterol numbers are not at the bottom of the UK’s range, but also not at the top.

It seems there are a number of cholesterol measures to take into account and a number of ways to skin this particular cholesterol cat?

This is a UK page I found (the UK and the US seem to measure things differently).

High cholesterol… Says who? There are SO many opinions to hear. We need to decide who to listen to.

I’ve been to have a look at whether my cholesterol levels are fine or not?

We (the Western ‘developed’ world) started avoiding eggs and saturated fat after listening to flawed research in the 1950s!

What follows is a quote from the guy who got us throwing out the best part of an egg (the yolks) to save our hearts and cardiovascular system. In a 2004 editorial in the Journal of American College of Cardiology, Sylvan Lee Weinberg, former president of the American College of Cardiology and outspoken proponent of the diet-heart hypothesis, said

The low-fat, high-carbohydrate diet… may well have played an unintended role in the current epidemics of obesity, lipid abnormalities, type 2 diabetes, and metabolic syndromes. This diet can no longer be defended by appeal to the authority of prestigious medical organizations.

one of my favourite meals

I found this site very heartening (excuse the weak pun) in how it neatly debunks the heart health myths we’re peddled, daily.

Even if we eat NO cholesterol our liver makes cholesterol, this is a good thing as we need it to make hormones that are essential for our wellbeing. that FACT is mentioned less on heart healthy websites!

I can’t help but wonder whether our increasing talk of stranger danger is keeping our children from exercising and being able to deal better with whatever we throw into our stomachs?

It’s being proposed that children from the age of 9 ought to have their cholesterol levels regularly checked?

It’s now been established that eating cholesterol has little if no bearing on the fat levels in our blood. Thanks go to Chris Kresser for the link further up.

Continuing to make low fat margarine and low fat other stuff, has created a mighty industry to keep up. You would have thought this would be especially tricky in the face of uncomfortable truth!

Eggs and butter REALLY don’t cause high cholesterol!

I repeat, dietary fat and cholesterol are not our enemy but we have a huge industry interested in keeping us misinformed.

 

I’ve been using coconut fat in place of butter. It has  an equivalent amount of saturated fat to butter but I have been reading recently that butter is a ‘safe’ dairy food. It doesn’t contain as many of the proteins that other dairy products contain? Our bodies can get confused

Since I was little I’ve not liked the idea or taste of consuming another species’ growth fluid (breast milk from another animal) but apparently, because butter is higher fat there’s little space for the rest of the casein I’ve been avoiding by ditching dairy.

I’ll talk about avoiding dairy in another post, soon. Here is another post where I talk about lots of things that go into how our bodies function.

This nutrition lark and high cholesterol (?) is not straightforward!

I refer again to the link near the top of the page which had a number of myth busting bullet points (Myth No.5).

People who have heart attacks have LOWER cholesterol levels than those who DON’T have heart attacks!

I’ve gathered, if we want to live longer then let’s not be concerned with cholesterol levels? On the other hand, our weight and an out of control insulin response to sugar (and everything that contains it) WILL contribute to heart disease and possibly a shorter life!

Search High and Low

I watched an interesting show this morning on allfour (after forgetting to record it last night). I was expecting (perhaps wildly) a sharp focus on a new treatment or at least a Search High and Low ethos that perhaps didn’t involve further damage to an already damaged body.

The Search for a Miracle Cure

I’d read an article about arguably the UK’s most well known solicitor on his investigation into a treatment option. The Jewish Times (fleshed out a press release?) in the summer.

Very good at his profession to which Rupert Murdoch (News of the World closed thanks to Lewis’s court actions) and columnist Katie Hopkins (forced to say sorry!) can testify

Lewis said he wouldn’t go down without a fight against MS.

On the programme he didn’t appear to be considering the physical side of his being at all?
His long suffering partner helped him out so much he barely needed to move?

Perhaps having a career that involved lots of thinking and inhabiting the brain (whilst getting paid handsomely to do so) has helped him leave his body all the more?

In the show Mark Lewis wondered about stress playing a part in the progress of his disease. He seemed to be almost questioning whether anything as ‘simple’ as stress and emotion could have an effect on the functioning of his body!

After watching, I felt fairly sure that his somewhat chaotic early years had had a part to play in his body developing MS. Gabor Mate goes into this question very well in his book, When the body says No.

An exercise ball that is good to lie on the ground and rest your legs on whilst exercising them. Look on the page for further explanation.

In the programme he was hoping to get good results from a stem cell trial being carried out in Jerusalem. He needed to visit the country twice for two treatments (one was real and the other was a placebo). To keep the study resembling science it was ‘double blinded’ neither the doctors or the patients knew which injection into his spine was of stem cells harvested from his bone marrow on an earlier visit to Israel.

After the first treatment he was more mobile and wondered if he had the active injection of his stem cells. He was walking more easily, didn’t require a stick so quickly. His balance was better and life was easier all round.

6 months later when it was time for his 2nd injection he felt the first injection MUST have been placebo as the effects wore off after a time. Unfortunately we never found out how the 2nd treatment left him.

I think the solicitor was missing a trick.

Lewis didn’t appear to search high and low for help with his MS.

his body, all on its own  (functioning as the placebo) helped things work better without any active ingredient Joe Dispenza has written a very intriguing book You Are the Placebo which I mention in an earlier post.

The improved mobility could have been prolonged if he’d done some exercise to build up the muscles that have been inactive for a decade at least.

I don’t have the brains/doggedness to continue working as he obviously does but I do have the doggedness to not let my body go down without a fight.

A handful of sites  to continue our search high and low for healing from MS

  •  Bob and Brad (focussing on fall reduction for elders
  • a lady from Birmingham  working for Move it or lose it and looking at improving balance 
  • Trevor Wicken from the MSgym on facebook is under the age of 40 (unlike the others)

It’s not sexy or attractive

to be looking at fall reduction, but it can save us!

I keep a browser window open for all of them to encourage me to exercise (I was never a big exerciser even before MS). I get far less exercise these days. I’m sure none of these guys will mind me pointing out that none of them are wearing a speck of lycra or encouraging us to ‘feel the burn.’ They do break down (in their own ways) what processes go into the art of walking.

A few years back I was meeting with a Feldenkrais practitioner who handily, lived a couple of streets away mentioned on these 4 different pages.

SEARCHING (a box at the top on the right of this site) is the best way to make use of these pages. I think my IT literate husband (thanks T) is probably one of my more recent helpers.

Apologies for posts up until now.

I found myself regularly on a search high and low for content: I wrote the bl**dy things!

I will get better at categorising! Thank you for sticking with me!

Dehumidifying to affect where we are now?

Probably this should be split into a larger number of posts? What for example does dehumidifying have to do with youtube updates?

I recently made an update to my first ever youtube clip. In the more recent update I’m moving around a bit rather than sitting in two locations that I’m mysteriously transported between.

I was able to move better back then than I am now.

I think my inner pessimist shines through when I act as if things are bad. It seems to be a recurring theme, showing up at various points in my life.

The following image was put at the beginning of my updated status report. My own little joke; as you can see I move about the same pace as a snail nowadays.

Keepin’ it real

This isn’t a great way to be portrayed and my first clip demonstrates that I wasn’t comfortable with showing my unsteadiness. I wasn’t used to being a little unsteady and so we’re left to wonder at the mysterious transportation between locations!

This time round (on the suggestion of my filmmaker friend, Toby) we are being a little more ‘authentic’ and honest.

I think it was a good call to make. In these clips I present myself in the best possible light (ignore my grubby hair). I talk about what I’d like to do and aim to do but there are still times when my aim is wide of the mark.

I’m not one of those people who believe there’s no such word as can’t because there patently is.

I’m also one of those people who think things are worth chipping away at because you never know, you might end up a few steps further along than when you started.

A change was better than a rest!

Like many people recently I went to visit family for a couple of days. In that time my whole body worked better but mostly my brain, nose and bladder. on getting back home things eventually returned to the way they were, my walking and thinking slowed and my balance worsened… noticeably. It may all be psychological and perhaps these effects were from visiting family but I don’t think so. I didn’t have a post nasal drip and my family don’t normally affect how my nose does or doesn’t run.

Dehumidify to address mould (it’s everywhere)

My next installment could be looking at harnessing the anti-inflammatory effects of proteolytic enzymes or questioning whether it’s worth worrying about candida (mould in the body) when we have condensation at home (potentially, mould in our environment)?

This link helped get me straight and the man’s midland accent is darling especially when being described by Americans in the comments below it! Some of the American sites addressing the ‘mold’ issue can be a little alarmist but the truth is, unknown damage could be happening to us where we live. Mostly this can be ok, especially if our bodies are working at their tip top best

I bought a HEPA filter after reading on a US site about the perils of mould and its effects on brain health (amongst many other organ systems) before realising that the best way to go at this was to get a dehumidifer to dehumidify or reduce the moisture in our house (we don’t have a tumble dryer so, since moving to a condensing boiler and away from an airing cupbard washing dries near the radiator).

I look forward to sharing with you how I get on with one of the two different types of dehumidifier on the market.

super quick

How’s your community?

This post is about a question I’ve had for quite a long time.

I started wondering about a week before I broke my foot. Two metatarsals as it turned out the next morning at Accident and Emergency made a truly memorable definitive almost, cracking sound.

Instead of earning the injury smothered in glory and basking in shades of heroism on a field of play somewhere, I misjudged the last step at the bottom of a flight of stairs… in my own home.

I was distracted by something (you’ve perhaps noticed that likelihood from the breadth of previous posts). I choose to keep reminding myself fuzzy thinking and unclarified thought processes happen even to people without the cognitive issues MS can bring.

…Let’s get back to a topic in this post:

At the end of 2013 as an owner of a long term condition and a potential beneficiary of future medical research, I was invited to take a tour around a stem cell lab in Cambridge. The mice whose brains provide said cells are looked after incredibly well. Good food (I assume although I didn’t taste it), fresh air and calming, soothing treatment right up until the point of execution.

Even before a trial can start the three Rs of animal research must be asked before any vivisection can take place:

  • Replace the use of animals with alternative techniques, or avoid the use of animals altogether.
  • Reduce the number of animals used to a minimum, to obtain information from fewer animals or more information from the same number of animals.
  • Refine the way experiments are carried out, to make sure animals suffer as little as possible. This includes better housing and improvements to procedures which minimise pain and suffering and/or improve animal welfare.

(Taken from Understanding Animal Research (the organisors of the event at one of Cambridge University’s colleges).

 

community

Their physical condition was being well taken care of but the thing that might have distracted me from the bottom step before I met it sooner than expected, was curiosity and concern about the animals’ wellbeing as I knew their health was well catered for.

The folk working in the lab were very pleased with their new consignment of individually air conditioned living quarters: each mouse’s bedsit was a bit bigger than the size of a shoebox. Each animal was effectively in solitary confinement and had a layer of clear, climate controlled air and at least 2 sheets of rigid plastic between it and its neighbour.

It’s hard not to draw a human analogy as these experiments are being undertaken because the mice are similar to us. The life of a mouse is worth less than that of a large primate in animal research circles; The study has gone through the three Rs so human and mouse brains must be similar enough to be worthy of taking animals’ lives.

These mice didn’t have any social interaction or while we’re thinking about it, access to exercise.

A lab assistant had been telling me of playing the radio 24/7 so the cortisol levels of the mice didn’t spike in response to stray loud noises (which were now being muffled by local radio). Uneven hormone levels could introduce an unwanted variable into the studies, making the end results at best, unreliable.

whilst  the  mice seemed to be well cared for during their shortened lives their care seemed to fall short (in the eyes of this non animal biologist)

We, as humans are advised to get some movement into our daily lives. Our bodies, we’re told, will function all the better for it. Without movement our bodies will atrophy and succumb to all manner of lifestyle diseases. Sarcopenia (muscle loss) we’re told isn’t an inevitability of growing old. Our brains will also suffer from slowed cerebral bloodflow brought on by reduced physical activity.

It’s suggested we cultivate human interaction in our lives and be present in our community. Study after study show survival rates  and life expectancy decline with increasing isolation.

The mere extension of life is no measure or indication of the quality of that life but our experience of life becomes richer in company… even if it’s only to give us the chance to grumble about others: we NEED others in our lives!

To this end I am setting up a public meeting to listen and talk with and to our community about itself.

I’m not entirely sure what the take home from this post is other than don’t be mistaken for a mouse, get as much movement as you can and speak to people on whatever platform you can. Reading this online you have access to a computer; search for a special interest or support group if it’s tricky to get out physically and meet up – no matter what our situation there’s bound to be someone else in our shoes that’s set up a group for people like us (fellow human beings).

Seek out connection, the quality and length of our lives a bit depends on it!

Another post will focus on how our microbiome, made up in part by the communities of bacteria in our bodies that help digest our food and produce happy brain chemicals also need to be paid attention to. How can we eat better to help keep them, and us, happy and functioning as best we can?

This blog is about finding ways for everyone to feel a little bit better.

Thanks for joining in, it would be great to hear your thoughts on some of the issues covered in this post.

 

 

Investigate!

Blue skies are here again!

As an antidote to the functional infographic of pathologies further down the page here’s some blue sky to gaze at 🙂 although there does seem to be quite a lot of it about looking out of the window at the moment.

blue sky

Apologies for sparse posts recently. I promised a post about stress reduction strategies in my last post and that’s still to come as I talked about the bad effects of stressors on the body. The good effects we can generate are still to come… I’ve not forgotten about it.

I’ve been getting my learn on using a somewhat scattergun approach.

There are various functional approaches to improving wellness including FMT and cPNI (a bunch of acronyms again). These strategies have held my attention as I’ve chosen to investigate them aswell as taking an online microbiology course from the University of Boulder.

I received this graphic from a health blogger I’ve been following for… what must be 10 years?

I need to adjust my thinking on this ‘new’ technology! I know a version of the web has been around since the 50s but I had no dealings with ARPA net, the military early adopters.

Finding approaches to fixing my leaky gut is something I plan to revisit (after talking about gut permeability in previous posts) Step up candida to take your rightful place as just ONE of many things that can cause a leaky gut.

Christa Orrechio is another health and wellness online presence I listen to and will be trying some more approaches that will deal more effectively with bloating and other digestive issues which are some of the more visible signs of an unhappy tummy.

I’d been on rotations of various anti virals, antifungals and anti-parasitic protocols before but a more integrative/holistic protocol that promises to deal with inflammation of the gut lining before worrying too much about clearing gut baddies (fatigue and brain fog are two other symptoms).

functional considerations

 

cracking the wellness code?

This post like many of the others on this site will look at alternative ways of avoiding or possibly lessening lingering unwellness. This applies whether you have a chronic condition or not: After we’ve tried adjusting what, when and how much we eat as well as what, when and how much we move (or be still) we can start to try and address other energy sapping intestinal hitchhikers.

These are approaches I’m trying at the moment to help crack the code of monochrome vibrancy, including the presence of candida and other naturally occurring alien invaders!

  • It’s refreshing to see a doctor acknowledge that yeast overgrowth is a problem and not all in the patient’s head.
  • Shingles (one type of virus we carry, usually without problem) might be an issue for you? If you had chicken pox as a youngster it’s with you for life. When we’re feeling fighting fit this is fine as our immune systems keep it under control but if we have a series of stressful events and life just generally is not feeling like it’s under control the virus that keeps itself to itself most of the time can come out to play by travelling along nerves to make sore blisters/lumps on our skin.

 



 

If you’re one of our regular readers, you may have noticed a change in the way the site looks?

We’re getting happier with its usability. As the volume of posts increase, some visitors had been finding it hard to navigate once they’d reached us.

Let us know what changes you might like to see and we’ll continue to do what we can to make change happen.

 



 

As part of the next installment of my ongoing candida campaign I’ve been taking a biofilm disruptor (between meals) alongside a set of antifungals (with meals) reduced from last autumn.

  • Since reading this page, stumbled into after much searching in frustration at what seemed to be a stall in my chance to get a seat at the wellness table I’ve been taking a disruptor (not dementor). Biofilms are everywhere, apparently: what we brush from our teeth every morning is made up in part from biofilms being created by the bacteria that like living on our teeth.
  • I’ve also started a parasite cleanse consisting of a short course of clove, wormwood and black walnut extracts (read on to find out why).

Yeast (singular or plural? I’m not sure) create Harry Potter style cloaks of  invisibility which leave the yeast impervious to an increasingly inhospitable intestinal tract. It’s one of the reasons antibiotics can sometimes lose their effectiveness (perhaps part of what makes a bug super, too?) After a time, the antifungals including oil of oregano, Uva Ursi, Pau D’Arco, Olive Leaf Extract (amongst others) also stopped working.

My candida reduction protocol started in earnest last August following Christa Orrechio’s suggestions  (mentioned and linked to in another post here) and had been going very well til Christmas.

Things seemed to slide a little as life happened, seasonal celebrations were had and more sugar came into my diet. Shame on me, time to get back on the sugar free wagon, I thought.

Is it blind arrogance to imagine we, as humans are able to gain control of these  opportunistic, hugely successful invaders?

Yeast (in many forms) has been on earth for longer than us and has developed a trick or two to make sure it stays alive. Perhaps we need a certain amount of respect for these immigrants and learn how best to live alongside them?

Whilst facing the yeast shaped beast, we most likely, are also dealing with our addiction to sugar.

I have a handful of skin eruptions on the fingers and thumb of my right hand. It has been suggested to me they could be viral in nature and not, as I’d previously thought: A sign that deeply embedded yeast was on the move in my slowly healing body.

 

makers mark on a building construction

 

This life stuff doesn’t seem to have an easily crackable code to me, yet. But whatever the cause I’ve been feeling pretty good in myself. Sometimes it can be best NOT to look for the code but be glad SOMETHING is working (also referred to as not looking a gift horse in the mouth).

A future post will be about PsychoNeuroImmunology. I was recommended Jo Dispenza’s ‘You Are The Placebo’ as a worthwhile read. It is very worthwhile and also a fascinating, inspiring and empowering way to consider an uneven system.

A nutritionist friend is taking a cPNI training at the moment. I’m excited to see what’s to come, her trainer said he saw people with MS leave him without MS!

Oxygen: the stuff we breathe

This post (like most posts so far) will be about oxygen, the stuff we breathe daily (all being well) including links loosely connected to measuring and increasing oxygen in the body.

I started taking high density oxygen therapy (breathing 100% O2 in a decompression chamber) three and a half years ago.

When I first started the treatment there was a definite, noticeable effect: picture the dullness of a grey, overcast day and compare that with how we can feel utterly lifted on a bright, sunny, blue sky day. That’s the best way I could think to describe the therapy when I started.

Physiologically, I believe the sessions were addressing low level yet chronic hypoxia in me. I don’t notice those benefits quite so sharply now but I believe that’s because regular sessions keep the level of O2 where it should be and I was treated for CCSVI almost three years ago which I think addressed shortfalls in the easy circulation of blood around the head.

view through a decompression chamber porthole

As well as improving mood it helps bladder function and decreases my fatigue.

These things haven’t been tested although an interesting study in pubmed from April 2013 looks at the effects on an injured brain. Refractory (persistant, not easily fixed) depression they conclude improves with hyperbaric O2 therapy and doesn’t carry any of the adverse effects of anti-depressants. Removing the troughs but also the peaks of life seems a pretty rubbish side effect of something that’s supposed to bring you back to a place of experiencing joy in life.

Regular exercise has also been reported as good for depression perhaps by increasing bloodflow to the brain?

The brain not getting enough oxygen knocks all the brightness out of life. Literally, we’re not firing on all cylinders. Which is a very unscientific way to describe what a number of people with (and without) MS are experiencing every day.

A group of people who are interested in exploring the effects of less oxygen getting to the brain is NASA, in partnership with Paulo Zamboni and the Italian Space Agency. More is reported on the study here. An Italian astronaut has been measuring the effects of zero gravity on the human body’s ability to deal with slowed venous return from the brain.

This is a study, reported by the BBC and I wanted to highlight some of its crapness. As soon as folk start using the word ‘could’ they’re not making any claims that can be backed up, they’re just filling column inches. This ‘could’ be an interesting line of investigation but it is a study formulating a theory based on the patient’s own feelings. The study participants self reported on how forgetful they felt they had become and conclusions were drawn from that?

Now, I’m all for not putting all one’s hopes in what has been delivered to chronic conditions via the double blind placebo controlled trial but a whiff of scientific rigour might be nice.

The Cochrane Group do meta analyses of already published research. This is their section on studies of the condition of MS and other diseases of the CNS (Central Nervous System) and their analysis of the various treatments whose studies reach their requirements.

Oxygen and the Brain; The Journey of Our Lifetime is a book written by the professor who, I believe, has been advising to the MSTCs (Multiple Sclerosis Therapy Centres) since they were set up in the UK in the 1980s.

The therapy has been reported in The Telegraph it was also in the Daily Mail but I’d heard the Telegraph may be serialising parts of Prof James’ book in 2015. Both papers highlighted the benefits that injured returning soldier Ben Parkinson has experienced.

When trying to find an explanation of what happens during an hour’s breathing in a pressurised container I stumbled on this link.

Reduced oxygen it seems isn’t even good for our furry friends!

 

 

disenchanted forest

disenchanted

Sometimes it feels as if my very determined cat has as much chance of getting to the bottom of MS as the current crop of researchers.

What does Russell Brand (famous in the UK for being a non-voter, comedian, actor, past drug user and ex husband of Katy Perry) have to do with the current state of MS research?

Much more than my cat, it turns out.

A number of us with this particular chronic disease are disenchanted by what the medical establishment are offering us.

We may not be debating such lofty subjects as the future of democracy but the stranglehold the MS establishment (neurologists) have over our care is every bit as important in our lives.

A number of us have chosen not to participate in auto-immune theories (and treatments developed from them) and as such we could be considered to be disenfranchised.

disenfranchise
ˌdɪsɪnˈfran(t)ʃʌɪz,ˌdɪsɛn-/
verb
past tense: disenfranchised; past participle: disenfranchised
  1. deprive (someone) of the right to vote.
    “the law disenfranchised some 3,000 voters on the basis of a residence qualification”
    deprive (someone) of a right or privilege.
    “we strongly oppose any measure which would disenfranchise people from access to legal advice”

We, as owners of an as yet impossible to cure disease have been deprived of the right to a second opinion in the research field. MS is many things to many people. Prof, Giovannoni has been receptive as have many others, to the idea that MS is multifactorial meaning it has a number of possible causes including exposure to the Epstein Barr virus, lack of appropriate sun exposure/vitamin D deficiency whilst our bodies develop, a trauma to the head prior to symptom appearance and exposure to emotional trauma to name just a few likely suspects.

So, we believe there isn’t just one story to explore in the process of finding a cure and would rather not be given chemotherapy drugs before the experts entirely know what they’re dealing with

I can’t speak for anyone else but I’ve become pretty disenchanted with the status quo. I have reached a similar conclusion to Russell Brand – it’s best not to hold one’s breath while expecting change.

Another piece of news caught my eye this morning which is sort of related Sir Nicholas Winton. Here is a man who coudn’t stand by and let things carry on as they seemed to be destined to. I’m not comparing a contemporary cenlebrity’s actions to those of a one hundred and five year old’s action on the eve of the 2nd WW but the fact I can mention them in the same paragraph only serves to highlight how few folk there are who are willing to put their heads above the parapet.

 

 

The MS treatment I want to explore

deflated scull and crossbones balloon

In the news today (20 October) the UK was given the proposition that dying folk should be given experimental drugs before they get through the full trial process. Let’s ignore for the moment that the full trial process hasn’t delivered much for MS patients. So what sort of shenanigans are pharmaceutical companies looking for? Extensive testing hasn’t worked in MSers favour so what sort of dark hell might be unleashed without the double blind placebo controlled ‘gold standard’ in place?

Colorado have reported on this idea in May which a bit puts paid to my theory that it was a fine piece of distraction from the venal behaviour of drug companies not investigating an African disease until it starts threatening the monied, developed world.

My first thought was that it was a bit of damage limitation from the pharmaCos to distract us from the fact that curing a killer like ebola just isn’t financially worth them even starting (do they have a union that does pr for ALL their questionable/commercially sound behaviour?).

Bloomberg Businessweek reported on the plan in August.

Why does the treatment of the disease Ebola have any relevance to MS?

Don’t worry, I’m not connecting the two in a  symptom sort of way but I believe both conditions have been poorly served by pharmaceutical companies.

I really feel quite uneasy about the treatment that pharmacos have meted out on MS patients throughout my 20 year ‘MS career’. When I couldn’t get hold of DMDs, before they were available in the UK I wanted them very badly, then NICE was born (especially to avoid the ‘postcode lottery’ surrounding MS prescriptions) and they became available so I read up the trial results as I’ve mentioned more than once.

In my mid 20s with not many regular symptoms it didn’t make sense to me to take multiweekly injections for a less than 50/50 chance of benefit. Other than a couple of goes at steroids to get back my ability to walk again after fresher’s flu went bad in me I have stayed pharma free.

I think I’ve talked about a vascular aspect to MS having been spotted by Charcot in the 19th century. He gave this disease a name and yet this aspect of our condition is barely being investigated. I’ve certainly mentioned my own taste of this theory in Brooklyn a couple of years ago, where an ultrasound was taken of my jugular veins from the INside where a valve was seen to be blocked shut.

We have more and more appropriate imaging technology since noticing in 19thC postmortem brains that veins might be implicated. Why is this theory not investigated further with the full force of what we have at our disposal? It doesn’t help to get too stressed about it but, no matter how many times I stamp my feet, life STILL isn’t fair. My blood gently simmers at the injustice of our woefully inadequate treatment from the people we’re supposed to trust. I feel for those who live under the shadow of Ebola and the horrific injustice they face every day when they continue to see no effective science being done in their name.

I’m glad my father encouraged me to question everything (perhaps not consciously but he did). I think it’s stood me in good stead for identifying folk’s motives. Although I s’pose, with pharmaceutical companies you don’t have to dig too deep to see the profit motive.

Perhaps I’m very wrong though? See, that ‘question everything’ trait is shining through!