#MillionsMissing

#MillionsMissing is a global campaign for myalgic encephalomyelitis (ME) health equality. We rally around the world for increased government funding for research, clinical trials, medical education and public awareness.

ME (commonly known as “chronic fatigue syndrome”) is a systemic neuroimmune disease characterized by post-exertional malaise (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system.

Led by #MEAction, the first global #MillionsMissing protests took place in May 2016. It has since grown each year to an astounding 100+ cities and virtual protests in 2018. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound and an estimated 75% unable to work.  ME affects 15 to 30 million around the world, yet this disease remains invisible and people are missing from their own lives.

My Personal Experience

Now, I’ve written a lot about CFS/ME as I’ve been blogging. So, if you have followed me for a while, you will have some idea of my experience. I’m not planning to go into huge detail again here now. So, if you want more detail, take a look at this link where you will find my past blogs around the illness.

The succinct version is that my own journey has been a rollercoaster that has taken me through all the stages mentioned above. So, I sit here now, feeling like a part-time player in my own life. I don’t just mean part-time right now (although that is most definitely true). I also mean part-time historically. So, friends will have noticed me missing from my social life at various points. My ‘career’ has been non-existent in the conventional sense (but thank goodness for beads!). And my own family has had to get used to me being present on a part-time basis.

None of that has been easy for me to deal with. Nor for those close to me. But it has taught me a lot. It has carved out the person I am. And I am incredibly grateful to those who have stuck by me and supported me in all kinds of ways.

An update

I also promised my regular newsletter recipients that I would be writing an update on my health. So, here it is…

It is now coming up to the third anniversary since I crashed big-time, again. What do I mean by that? Well, I found myself bed-bound for a period, then house-bound for over a year.

During that time, I began working with the Optimum Health Clinic (please use this link if you are also living with this illness and want some help). I have been undergoing a barrage of tests, identifying problems with my Mitochondria, my digestive system, my immune system and my central nervous system.

So, absolutely none of this is in my head. The physical problems are very real, and have been pretty severe, even though there may be nothing to see on the surface.

That process of testing is also monitoring my progress and showing improvement in some areas. This tallies with how I’m feeling. Over the past few months, I’ve tentatively started to pick up a bit of a social life once again. It’s hard: outings still take their toll on me physically, so I have to plan around that and ensure I get adequate rest to prevent a major relapse.

I’m currently taking over 20 supplements a day to support this. So, that requires some dedication and yes, if I stop, I do go backwards.

I’m not yet working full-time. Although you might be forgiven for questioning that if you have been following my beading. (Back to that in a second!)

Watch this space…

I don’t know what the future holds. All this progress doesn’t follow a linear path. So, I get weeks where I can see progress and weeks where I regress again. But the general trend is upwards and I hope it might lead back to full health eventually.

Smoke and mirrors

So, back to that question. If I claim to be one of the #MillionsMissing, how am I producing all this beadwork?

Well, there’s a few things going on here…

1. I don’t feel I have a choice. Unless I’m constantly visible on social media, constantly producing new designs, there is just no way I can even begin to earn the money I desperately need to cover the cost of my treatment (on top of all the ‘normal’ bills in life).
2. The beading itself is actually part of the treatment. A big part of healing comes from relaxing and beading is relaxation for me. (Writing up patterns, marketing, writing blog posts, answering emails, not so great, but necessary…!)
3. The wonders of technology mean I can create an illusion of doing far more than I am. So, I use a lot of automation. When you’re reading a blog, or an email, or a Facebook post, I may actually be lying in bed resting at that time. I have learned to be very efficient with the limited energy that I have. I also plan a lot. So, I can plan and set up a series of communications when I’m having a ‘good’ day, to give the illusion that I’m still working on a ‘bad’ day.

The point about living with any illness or disability is you have to learn to adapt. The illness isn’t going away and life doesn’t stop. So, I have to find creative ways of living with this.

What does #MillionsMissing hope to achieve?

On one hand, I think my quote from their campaign explains what they want. More funding for research and more help and understanding for patients.

But what does that actually mean? How do I see that and why am I writing this?

Lack of research is one issue…

It’s easy to sit here and shout ‘nobody understands this illness’. And yes, that is true. We don’t know what causes it. We don’t have a test to diagnose it. And we don’t have a cure. So, the diagnosis of CFS/ME is a depressing life sentence.

It is also true that the medical and scientific community has wasted decades in dismissing this as a psychological issue, instead of carrying out proper research.

But that ‘simple’ view hides the fact that some scientists and some doctors have taken patients seriously. Patients themselves have fought to be instrumental in their own recovery. So, it’s not true that we know nothing.

We actually can see a lot of what is happening in the body of an ME patient. We just don’t know why it’s happening and we don’t have the tools to stop it…or do we?

But there may be more answers than you think…

My experience working with the Optimum Health Clinic suggests that they do have a system, rooted in science and medicine, that is helping to control or reverse my symptoms.

They are also trying to ‘prove’ their system and gain accreditation that would make it available on the NHS. This is a process that is going to take years, but if you want to find out more, and help, use this link>>

I have also used the help and information provided by Dr Sarah Myhill on her website. She previously worked for the NHS, but became interested in CFS/ME and that gradually took on her whole focus. So, if you need some help and answers, this website is a good place to begin looking.

Dr Jacob Teitelbaum is another name that keeps coming up. Another individual practitioner who has followed his own path to research and provide help to patients with ME and Fibromyalgia. You can find his website here.

I have also been following a large research program that was recently set up in the USA. The Open Medicine Foundation is bringing together some of the best scientific minds and helping to fund projects that are researching various different aspects of the illness. They are also desperate for more money to keep funding these programs and others. So, if you want to find out more about that, follow this link>>

A reality check

That little list is actually just a small number of many more people and projects who are trying to find answers for the ME community. I want to be clear: I have listed them because I am aware of them. Not because I’m saying they are the ‘best’ or the ‘only’ hope for people with CFS/ME. If you know of other organisations that can help, please add their details in the comments below.

So, yes, part 1 of what #MillionsMissing would like to see is answers.

But let’s take a reality check here. What we know so far indicates that CFS/ME is an incredibly complex illness. It’s not just affecting one part of the body, but multiple systems.

How many years and how many billions have been poured into research for cancer? And we still don’t have all the answers there.

Don’t forget the other illnesses out there that are just as horrible and debilitating and under-funded or misunderstood.

So, yes, as one of the #MillionsMissing, I desperately want someone to do something to just make all this go away. Seventeen years is far too long to have been feeling like this. But in asking for that, I’m asking for something that is currently impossible. With all the amazing knowledge humanity has gained, we’ve also revealed how much we still don’t know. And the human body and workings of nature are still one huge mystery.

So, for me, today, it’s actually the second part of the #MillionsMissing aims that would be most helpful…

The #MillionsMissing need understanding

This aim goes beyond CFS/ME. It covers other illnesses and just attitudes to others in general. Too many humans are scared of what they don’t understand, too quick to judge based on appearances, and thoughtless in the words they use to, and about, others. This translates into anything from accidental hurt, to deliberate abuse.

Regarding CFS/ME

As an ME patient, it’s hard enough to find yourself locked in a body that gives you pain, refuses to function at a basic level, and generally causes enormous distress. You don’t understand what is happening to yourself. Nothing you do can take away the physical pain. You’re scared, you’re frustrated, angry, vulnerable, depressed, anxious.

The very last thing you need is for a stranger or friend to come along and look at you and remark, ‘you look so healthy’.

You don’t want that doctor to suggest you just need CBT (Cognitive Behavioural Therapy…translation: the problem is in your mind, so if you see a shrink, they can make it go away, if you’re willing to let them).

And you don’t want your boss, or the HR department to tell you they can no longer employ you because you’ve just shown yourself unwilling to work hard enough.

Why is it that so many humans are only able to offer sympathy or understanding for something they can see?

Is it really true that millions of people independently ‘decide’ to opt out of life? Are there really so many people who will fabricate such an elaborate ‘sickie’ that they not only deprive themselves of work, but also of fun activities?

The true impact of misunderstanding

All these unhelpful attitudes and careless remarks add another layer to the illness. And the fact that this is an illness that lasts years, not weeks or days, magnifies that impact.

The illness itself has led you to mistrust your own body. Other people’s reactions to it lead you to mistrust your own mind too. When enough people tell you, either explicitly, or implicitly, that you’re making this up, you begin to question yourself.

You lose confidence. Unless you’ve ever experienced being housebound for a long period of time, you’re not going to understand how much confidence you lose through that. That’s the illness. What you don’t then need is other people further crushing that confidence.

Every relapse is liking being pushed back to childhood. In a literal sense, you need looking after, like a child. Recovery from that is complex enough. Even if you manage to gain the physical recovery, you then have another layer of mental recovery to get through. You have to learn all over again what you are capable of doing. What your place in society looks like.

Then, you are still dealing with the uncertainty of wondering if you’re going to relapse and have to do this all over again.

To me, the surprising fact in all this isn’t that a lot of people end up committing suicide, but that more don’t.

Back to me

So, let me round off by saying that I’ve been lucky to have a lot of people in my life who have trusted and supported me. I say I’m lucky because I know a lot of other patients who don’t get that support, not even from their closest family.

I have also experienced attitudes that have been ‘less than helpful’, shall we say. These from strangers, people in authority from whom I needed help, and people who I thought were friends who knew me well.

So, I am grateful that my personal experience hasn’t been worse. Yes, I am writing this for me. But I am also writing it for the other #MillionsMissing who need help.

And if you’ve managed to read all the way down here, then you have already given them some help. You have just taken a little step in starting to understand more about CFS/ME. That will enable you to view the illness with more compassion. You are now slightly better equipped to provide more understanding to anyone you know with the illness, now, or anyone you meet in future.

If you feel compelled to do more, then you can start reading my other blogs here and increase your understanding even further. Or, you can donate to one of the research programs to which I linked above.

Can you please also share this so that more people are able to understand and help. Thank you!!