An amazing story!

Please read Sarah-Louise's story. You are welcome to re-post her story on your own Facebook, tweet the link to my blog, whatever; let's raise awareness of how severe M.E. can be.

If you would be so generous as to sponsor her too, you will find the link after her story. She's one of the most amazing people I know, so sponsoring her means a lot to me.

There is so much I want to say! Before I became ill I hadn't even heard of M.E and the first twelve years of my life were magical and very english. Then I had a vaccination against meningitis c and my health very quickly began to fall apart. At first it was just all kinds of aches and pains, dizziness, forgetfulness, nausea, the occasional fainting spell and a lot more tiredness but within two years I had a constant migraine and I struggled to drag my legs around because they were so heavy.

Soon I couldnt walk at all and I began to 'freefall' until I was blind and had no memories. I lost all of my words and my ability to understand other people speaking. I was so exhausted even when I woke first thing that it felt like I was trying to lift buildings to try and move.

I was housebound for a year and by the end of it I could stand for 30 seconds and manage a few painful steps, but then I relapsed again and became bedbound. I didnt sit up for four months, I barely moved and I couldnt talk. I had no sense of touch and no strength in my body. I suddenly perked up in April 2004 and could sit up and read a little, I was so excited. In July 2004 I woke up to find my whole body 'on fire'. So hot it felt like I was melting, so painful I wanted to scream and scream and scream. I honestly didnt think I could bear it for one minute. So far I have been on fire for eight and a half years and counting....

At first the pain, the heat and the pressure-which made my head feel like it was gripped in a vice- was so intense that I couldnt move or speak again. For six and a half years I was silent and still, simply enduring, my hearing was so sensitive that I had to wear headphones all the time. My parenst added another door to my room and triple glazed the window. every noise was still excruciating. I had blackout blinds because the light made me physically sick. I released a strange chemical that smelt acidic and clung in clumps to my hair, pooling in white/brown patches on my skin.

I woke one day to find my hands curled in fists, rigid, paralysed and I couldnt open them.

Nothing seemed to change until 2010 when they opened enough for me to be able to use my 'claws' and I began to be able to do little things despite the fire. like read and write and go online.

I am still bedbound, although I had a little time when I could move around the house last year, and the fire has been particularly awful again this last year.

Im 25 years old and I so want to live. I could write booksworth on everything thats happened, but really all I need to say is, Invest in M.E are actually doing something to help people like me...and their are hundreds of thousands of us. We all fight the same dragon, we all want to beat it so we can be free.

And I cant even tell you how heroic my M.E friends are, what they go through and also how kind they are to other people! If you dont know them, you are missing out!

With them and the girls from my old schools, and other people Ive met along the way, I feel that I have a life rich in people. But I am a young, free spirit trapped in a body that will not work! Invest in m.e want to change that.

And as to losing the 50 lb, its something I really need to do, although I do not know who is going to keep mr.kipling in business without my help ;)

Click here for Sarah-Louise's Just Giving Page

Amazing isn't it. Can you imagine being totally bedbound, unable to move, you can't cope with light, or sound, and your body is burning from head to toe - for years? 

I can't. I have M.E.. I've experienced what Sarah-Louise describes, but for me it was only a few months. I simply cannot comprehend enduring it for what must have seemed to be endless.

Sarah-Louise has suffered more than anyone should in one life time, yet all she wants to do is give! She's one of the most encouraging people I know. She's that little light blinking away at the end of the tunnel. So, please .. help her raise the money for IiME. It will make her so happy.

Hello!

I am well aware that I have not made any updates for a while. There's a good reason for this. Well, two good reasons.

One is personal. I think I should be honest with myself and say I'm relapsing. I keep saying it's a crash, but it's been ages now. I had a shower yesterday. That was yesterday's activity. This morning (morning by my terms is usually about 1pm) I spent ages looking for my trousers. I eventually found them; on my legs. I'm not sure whether that means I slept in them, or whether I'd already put them on and had forgotten about it. 

One of the things I hate most about M.E., is that when they hand you out the long-term-sick card, they also replace your brain with what I can only presume is liquid nitrogen. I may well be stranded in bed, but I would at least appreciate the ability to control what the hell comes out of my mouth! It's so effing well frustrating; while I lie in bed everything makes sense, yet when I try to rise, to share the ramblings that have been so perfectly articulated in my head, I cannot remember a single thing. 

Anyway, the second reason for being distant recently is that I have pretty much lost hope. In the past I have shared articles as they have cropped up, to illustrate what is happening in this country, share my opinion, my view, etc. But now ... 

Every day there is more and more being written. Every day there is more coming to light. Not just in regards to benefits, but the government. I never wanted to blog about the government, but it's all tied in to one. They're changing .... everything! They are deliberately making the poor, poorer, and the rich, richer. They're taking everything that this country has worked so hard to develop. Privatising the NHS. Selling out to commercial industry. Changing laws to suit their agenda. Creating a secret court, the like of which I'd only heard of in reference to nightmarish stories from the Soviet Union. Honestly, I believe it'll only be a matter of time before the government decides we're no long a democracy.

My fight is gone. What they're doing is so totally beyond the power of people like me, that it seems more like an act of futility, possibly even masochism, to try and fight back. I wash my hands of it.

I'm totally and utterly powerless. I have no income. I have no means of getting any income. I do not believe it is coincidence that people who like myself, have tried to level the playing field, just that little bit, find that their records have been messed up, their MPs don't care, etc.

So ok, government ... I surrender!

M.E. Herbalist

I bring to you today, the story of another small trader, who has M.E.. If you're interested in herbalism, or seeking herbal product from someone who understands the condition, Merionwen is the business you want to look at. Here is her story:

Around six years ago I was married, had two smashing children and a job I loved. I had spent years working in the heritage and tourism sector. I provided costumed interpretation for a variety of heritage sites. Bringing entertainment to education and a sense of fun to stuffy museums. Prancing around castles being everything from the cook to the lady of the manor.

I was lucky enough even to be able to involve my children. It was long hours and involved a lot of background research but I loved it.

Then disaster struck. I had been diagnosed with gynaecological problems and severe anaemia. I just couldn't seem to find any energy.
I continued to try to work but my lack of energy started to show the cracks in my marriage.

I devoted all my time to my children foremost and then my career. I expected support and understanding from my husband but that wasn't to be.

Eventually the marriage became untenable and we went our separate ways. I suddenly found myself cast in the role of a single mother. Financial support was non existent and work pressure increased.

This stress was then compounded by my father falling ill and what seemed at the time as a minor car accident.

I suffered serious whiplash and I was left with back pain that never seemed to recover.

Next came the constant round of tests and doctor's appointments. I kept returning asking for blood tests and a reason why I just couldn't seem to get back on my feet. I was constantly bone weary but this was coupled with the searing pain that never seems to settle in any one place. I had constant muscle burn and my fingers and toes would feel so swollen I couldn't walk or pick up a cup of tea.

this all came to a head one day when I found I couldn't wash my own hair and cried out with pain when my daughter hugged me.

So back to the gp and a long and frank discussion. It was suggested I had fibromyalgia coupled with cfs.

Further tests proved this so.

I went on to be prescribed a battery of SSRI's and painkillers.

Over the following two years I put on five stone in weight and had to give up work. I just couldn't cope with being a single Mum and live with this illness all the while keeping up with my career.

It broke my heart the last time I said goodbye to my workmates.

I felt at my lowest ebb.

But, things were about to change. Almost like a bolt from the blue I was to meet my current husband to be, Andrew. We were sat at the table of a mutual friend while I expressed my loathing of the male species. Then he smiled and made me tea.

There is more to the story than that but lets just say over time I fell deeply in love.

He opened up whole new way of thinking for me. When discussing the medication it was him that first made me question whether the side effects were not as bad if not worse than the illness itself!

I am pleased to say I am free of all synthetic medication. I take a variety of supplements and have made vast changes to my diet.

Don't get me wrong. I am by no means cured. But I do cope! Rather well at that!

It was also himself who asked why I was not trading as a herbalist. One of the key parts I have played in the past is that of an herbalist. I know the subject back to front.

I told him how EU law suggested I needed a formal qualification. So he asked "why not get one then". Frankly I had no answer to this.

I went on to study Phytotherapy at degree level, a higher diploma in massage therapy, Advanced aromatherapy and most recently cosmetology (the study of natural skincare).

I am now proud to say my chosen career is that of an holistic therapist. I am able to work at my own pace and have a good client base.

However, that was never going to be enough. Over many years I have formulated and produced my own skincare products. These have been given as gifts of used by myself.

It is now time to turn the hobby into a business.

I am launching my own range of organic, natural skincare. IT is called Merionwen and is a business I feel very passionate about. four years ago I never believed it was possible to achieve these things and live with illness.

I have proved that that is not the case. I shall make success of this and I hope everyone else who has lived with any sort of set back can take heart and see what can come to pass.

I am attempting to get Merionwen on it's feet with a crowdfunder pitch. There are a variety of splendid rewards for anyone who invests.

What could be better than organic, natural, spa quality skincare?
Well all deserve a little pampering...

You can find Merionwen here:

The Crowdfunder Pitch

www.merionwen.co.uk 

Facebook

Twitter

See the Invisible

When you tell someone that you have M.E., most people tell you that they knew someone who had it, who had got better. Presumably most of these people are mistaken, or they all knew the same handful of people, since the rate of recovery is extremely low. Having said that, if people see you leaving the house, they presume you are better. If you fail to mention M.E. every time you see them, they presume you are better. Most people just generally assume that M.E. is a mild condition, which most people recover from with ease.

It is not. 

I've actually had people ask me why they don't see any of these really really sick people. It seems a really dumb question. It actually says quite a lot about the image M.E. has, rather than those people being particularly dumb. For example, if you assume you have flu when you actually have a cold, then you can't understand why others with the flu are throwing up, sweating hot and cold etc. You understand? It's the same with M.E.; it is NOT this mild affliction that the public have assumed it to be. The people you have known, or do know, who have M.E., particularly if you've not met them online, are most likely to be very mild cases of the syndrome.

The serious cases, those with 'moderate' or 'severe' M.E. are seldom seen. Those with extremely severe cases often can't even use a computer, so you won't even meet them online. Imagine that all you can cope with is lying in a dark room, in silence, every movement hurts. You feel constantly nauseous. Your skin burns, freezes, and itches, for no reason. You can tolerate few foods, so have either been losing or gaining weight for the duration of your illness. You practically rattle from the amount of medication you're on. Your limbs feel as if they have weights on them, and you can't tell whether you're holding something or not as your hands are not only in considerable pain, but are frequently numb too. Can you imagine how totally isolated these people feel? What are they to hope for?

A friend of mine, has been in so much pain that she has not even been able to talk. She just discovered that she can talk again, so to celebrate she made a small video. It's extremely illuminating. Please, view it. You will start to understand where the invisible sufferers are, what it is like for them:

Hello, ummm. Oh, I've made this message about three times, this video, and I have managed to cry all the way through. I am so distressed today, and I am so on fire, and I'm so shaky, and generally scared by what's happening. It's also a very very personal video, and I promised always to be very honest with you, but it's quite hard, coz the British English girl gets all sort of .. she wants to hide! Also I am fully aware of the irony of making a message like this, when I look like the wreck of the ##. But, you know, I'm sure I would scrub up all right, honestly, with .. uh ... a couple of ship loads of make up, and a hair brush would be a good start!

Anyway, the thing that I wanted to say, was that, I'm very afraid of dying. I think about it all the time. Ummm, the pain is so unendurable, and so constant, that in some ways there isn't any reason to be afraid of dying, because it would be an ending to something that is, on a daily basis, unendurable. And everyone who has M.E., is enduring the unendurable all the time. And we find things to laugh about, and we have each others, and we have our families and things like that, but it doesn't take away that the pain is constant and unrelenting and bit of a spiteful bully really.

And, and, I think about dying, and it it it terrifies me because I feel like I'm unfinished. I feel like there is so much of my life that I haven't lived yet. I got ill at 12, and was housebound by 15. I'd like to go to university. I'd like to travel, and I'd like to kiss boys(!), and I'd like to hug my friends, and to learn to fly a plane, and go up in a hot air balloon. I'd like to ride horses, I'd like to write books, I'm mean there's just so much I want to do. And life is so beautiful. The idea of not getting to actually live it is quite heartbreaking. But, when it's really really bad, I think .. well I do believe in heaven. I would probably do all of those things in heaven, except for kissing boys. And, I can't tell you what a heartache it is to think that I might die before I fall in love, before I ever really get to kiss someone. I mean I have kissed people, but it was absolutely disastrous *laugh*. Well, perhaps I shouldn't say that in case they watch this! But, it was not a fairy tale.

And, I've never danced close to someone who really matters, and no one's ever fallen in love with me, or been tender with me, or made love to me, or any of those things. And it feels like such a heartbreak to me, that I may never get those things. And, when I'm in my bed, and the fire is everywhere, even breathing becomes a mission, that's often something I think about! I think "I can't die, I can't die without knowing what all those things feel like", and I hate the idea that, in this world, because of the way doctors are neglecting people with M.E., there are hundreds, if not thousands, of young people, dying without having such ordinary and beautiful things.

I really really don't want to be one of them. But, even if I am, there are others going through it too. I mean, none of them would want to be one of the ones who didn't get those things. And it just seems so appalling to me that so little is being done, when life is so wonderful, and we would have every opportunity to live it if we weren't ill.

Eek! My ESA50 form's late!!!

Are you filling in the horrible ESA50 form, hoping you'll be able to claim Employment & Support Allowance? Do you have that horrible big black line on the calendar looming imminently over you? Don't worry. You can rub that line out if you have M.E. or some mental health conditions (sorry, but I don't know which ones).

This subject keeps coming up recently. Mostly because people have still only been given four weeks to fill in their ESA50 despite Christmas and New Year being in the middle of it. A lot of people are running late with their forms and panicking. I knew I had read somewhere that people with M.E. needn't worry about late forms, but I couldn't remember where. Then I found that I had saved the information to my computer ... hoorah ... but doh! 

So, I apologise, I do not know where this information came from, but do please feel free to use it. Personally, I would not recommend running anymore than a week late with your form. If you are returning your form late copy and paste the information below into a document and submit it along with your form and a letter explaining your reasons for lateness.

DWP will insist that they do not give anyone a time extension for completing the ESA50.

This is contrary to their own guidelines. In a letter to the Countess of Mar dated 21 November 2011 regarding the Incapacity Reference Guide, and the flagging of ME/CFS along with mental health conditions, the DWP stated:-

"Therefore, for the avoidance of doubt I can be clear that the Department does not classify CFS/ME as a mental health disorder. The asterisk next to CFS/ME in the Incapacity Reference Guide (IRG) is not as an indicator of its classification, but rather to alert decision makers to the fact that a proportion of people with CFS/ME have symptoms related to altered mental function. Mental health condition and those that have mental function impairment as a feature are highlighted in the IRG so that appropriate safeguards can be put in place. These safeguards include not automatically rejecting a claim to benefit should an individual fail to return the related questionnaire, together with procedures for additional contact with the claimant during their application if required."

It may be useful to quote this to the DWP when you ask for an extension, in any case ensure that they make a note of your conversation on your records, or perhaps it is better to put it in writing to them, so that, if ATOS refer your case back to DWP as a non-returned form, then they should have to take this information into account before making any decision to end your claim.

The incapacity reference guide is here:-

http://www.hmrc.gov.uk/manuals/spmmanual/spm50600.htm

The correspondence with the DWP regarding ME is found here:

http://www.meassociation.org.uk/?p=9327

Should anyone know where this information came from, please let me know so that I can give the relevant credit.

No Knighthood!

Strip Professor Wessely of his Knighthood!

"We the undersigned wish to make it known that we believe the award of a knighthood to the internationally maverick and outspoken psychiatrist Simon Wessely, whose views on several serious illnesses are seen to be patently wrong, and are widely abhorred by the experienced patients he purports to want to help, brings the whole honours system into disrepute, and should be withdrawn before the progress of real science, makes finally clear to all, the folly of his particular and peculiar sickness beliefs."

I have mixed feelings on this petition. I've not signed it, and I'm not going to.

I do not like Simon Wessely anymore than the next person with M.E.. I do not like his views, I don't like his trials, I don't like the way in which he's manipulated the medias view on our illness, and I do not like the way in which he's labelled himself as a victim because he's been criticised. Every scientist receives criticism; I've never heard of any of them claiming victimisation because of it though. Wessely is a nasty piece of work whose first priority is his reputation, and second priority is protecting his research. His patients don't even factor.

So when I see that he is nominated for a knighthood I am not happy. Not impressed. It shouldn't have happened. As it happens I actually like our Queen. She gives off good vibes. It's not her fault that she was born into monarchy. I certainly don't support the abolition of the monarchy. I feel very sorry for her that she has to be in the same room with The Weasel though. I would like to think that there was some chance of her doing the research behind knighthoods, but in reality someone else will do that. No doubt it Simon minions who nominated him. It certainly wouldn't have been any legitimate M.E. doctor, or an M.E. patient.

But I can't make myself sign it. Professor Wessley has gone out of his way to label people with M.E. as being crazy. He hasn't merely claimed that M.E. is a mental illness, but because people object they are crazy. He's over-exaggerated the number of people who complain, and the manner in which they complain. He overplays his hand. He knows he has more power than any of us will ever have. It must be fun to kick people when they're down.

I do not want my name associated with this petition. I don't want to be among those he sees as victimising him. I don't wish to give him that pleasure. He doesn't know me from Adam of course.

The fact that the petition is worded badly is besides the point. I could pick it apart easily, making it clear why it would never get anywhere, legally, but that isn't my point, unusually. The point is that the truth will out eventually. Wessely will be seen, by history, as a very nasty man. He'll be seen as someone who deliberately prevented very sick people from being treated. With any luck biomedical research will show this within our lifetimes, and have him called up on it. But again, not my point.

My point? What is a knighthood? These days it doesn't actually mean anything. It's an ego boost for him. It will mark him in history. And because of who he is, he will be remembered as being a creep. That isn't what he has aimed for, obviously, so by being knighted I feel he's stabbing himself in the foot really.

Harvey's Hammocks

We recently discussed an online store that has been set up by an M.E. sufferer because the benefits system has failed her. Today we have an M.E. (and Fibro) sufferer who has also set up an online store. In this case she has set up the store because she wants to feel that she is still making a contribution to society. As with many of us, she feels that being ill has taken away pretty much everything that her life was previously. She's building something, moving forward, out of a horrible situation. 

Harvey's Hammocks

Harvey's Hammocks is a small animal hammock shop run by a Fibro and ME sufferer.

Harvey's Hammocks provide a wide range of hammocks in lovely soft wools, each is washable, can be easily repaired if chewed, and has a lot of stretch. From the basic square hammock, to multi-pocketed creations, they even offer a customised hammock for any who are interested.

Offering an easy solution for genuine rescues as well, we provide a massive 15 hammocks for just £30!

I spend alot of my time bed ridden due to ill health and found most of my former hobbies were now impossible. While the Fibro and ME has taken alot from me I have been lucky in that my hands are mostly unaffected unless it is a severe flare up. By using support bandages and strapings to help with the pain and the shakes I have found I can crochet.

While I can crochet, the big projects like blankets and that, are beyond me as I have no strength. So I found myself looking for something to do. I have a group of pet rats, and we all know rats love hammocks, but being ill affording the ones on the market was becoming expensive as they were hard to repair when broken and my rats love to "customise" their hammocks.

I tried different sizes, shapes and styles and found what worked and what didn't and soon was enjoying making hammocks of all types that I had too many. This surplus went out as "testers" to friends and got a positive feedback. So wanting to feel like I make a contribution to life and not feel so useless and isolated as ME and Fibro can do to you, I decided to open up an online store as a trial.

There are of course a few things that may need explaining. Rats make lovely pets, so if you were horrified at the thought of pet rats I really do recommend that you contact her to ask about rats as pets, because you will be very surprised at how amazing they are. A hammock for a rat is not quite like a hammock for a human. They usually consist of a square of fabric with some form of hook attached to each corner, which can then be suspended inside a cage. When she says that rats like to customise them, she means that they chew holes in them. I would also like to point out to readers that other species appreciate these too, so if you have ferrets, rabbits, cats, mice, hamsters, degus, etc, that you may be able to support her work. She will crochet to order!

Social Services Stole my M.E. Child

Sonia Poulton is searching for a family.

I NEED A FAMILY. Not just any old family, mind, this family needs to have experienced the nightmare of what it means to have their child diagnosed by a medical doctor as having ME, taken from the family home as part of Child Protection order. The child then needs to have been returned to the family home because it was WRONG for Social Services to have taken the child in the first place.

If you know such a family, please contact me and I will pass on your details to her. Hopefully she will give me a better way of contacting her yourself in the near future, but for now, that's it.

Sonia, in case you are unfamiliar with her work is a UK journalist who has been working extremely hard to bring the suffering of people with M.E. to light. She totally gets it, which is very rare for anyone who doesn't have M.E., and she has the voice, and is in the position, to do something about it. An absolutely awesome lady. She's also been working hard on illuminating the problems with the benefits system. She doesn't have to do either of these things, but has chosen to. So, if you can help with her search, please do.

Her full post (on Facebook) was actually as follows:

I have a problem and I'm adhering to the school of thought that says if I share it then I should also halve the burden it is causing me, so here goes...

I NEED A FAMILY. Not just any old family, mind, this family needs to have experienced the nightmare of what it means to have their child diagnosed by a medical doctor as having ME, taken from the family home as part of Child Protection order. The child then needs to have been returned to the family home because it was WRONG for Social Services to have taken the child in the first place.

That precise requirement is what I desperately need in order to fulfil the demands of producers on a TV news report I am working on.

Some people are not happy that we need that type of extreme example - and I understand why - but in order for the public to 'get it' the media frequently has to SHOUT an issue. This is one of those times.

This report is designed to shriek so loudly that those watching it will have no alternative but to wake up. It will not portray ME as only worthy if it is extreme but it needs to shock people out of the stupour of believing it's not a serious illness. It is. It can, and has, killed. How much more serious does it need to be?

So far I have been unable to get the family we need. I have other families, with less troubles, but I need others.

It's not that these families don't exist - sadly they do - but they have been filled with so much fear and anxiety about having their child taken away that they are scared to speak up about it, even anonymously. Which is super sad, really, because it means that they are unable to help those who are enduring that misery right now.

So that's my very long way of explaining I have a problem and if anyone can help in any way, either by knowing a family of this description or re-posting this status in any relevant places, I would be grateful.

We need to be able to show the UK how people with ME are being treated and unless I can get the example required then I fear it will not happen. Thank you.

The Funky Orchard

There are many people with M.E. who are not in receipt of benefits. There are different reasons, though the most common is that M.E. is not a well understood illness. When someone writes on their ESA or DLA form, or even their blue badge application that they have M.E., the assessor doesn't understand what that means. Unless the applicant has had help from someone who understands both the benefits system and M.E., they are usually screwed. As such they are turning to alternative measures to try and scrape enough up to live by. The Funky Orchard is just one such example, I will let her tell you her story herself though, as it is a little different.

I have just set up an online clothing business called The Funky Orchard.

I could not receive ESA because my husbands earnings were too high. The DWP were supposed to be crediting my NI, but did not. So when my husband left, and I reapplied for ESA properly, I could not get it due to the fact that I did not have enough NI.

At first I was very scared. I was living on my savings, extremely aware that they would run out within a year or two. I didn't know what to do, or who to ask for advice. Then one day I was looking for a specific item of clothing online and suddenly thought "This is so hard to find, yet so many people would like it. Why don't I sell them myself!?!"

Soooo, I have thrown my savings into buying stock. Beautiful stock.

I aim to stock the clothing that is hard to find on the high street, yet so many people seem to yearn after. Alternative styles; goth, punk, hippy. In particular I am hoping to stock more larger sizes, as plus sized clothing is even harder to find.

At the moment I have some absolutely awesome items in stock. For example, we have Sari Skirts; skirts that have been made from sari fabric. They are in a variety of colours, as you can see from the picture of our stock cupboard. They are double layered, the fabric behind being a totally different colour to the fabric in front, giving an amazing iridescent affect when the skirt moves.

We also have some fantastic medieval styled tunics. They're perfect for people who like the pagan, or goth look, can be worn as a top or a dress, and for either casual or smart occasions.

I have both a website and a Facebook page. So please, come and 'like' us on Facebook, and have a look around the website :)

I need to clarify a few things from the beginning of her statement. NI = National Insurance. She was unable to claim Employment & Support Allowance Income Based because it is means tested; her savings were just above the threshold allowed. As such her only option was to claim Employment & Support Allowance Contributions Based, but because the DWP had stopped paying her National Insurance Credits without informing her, she could not claim this either. She can now pay NI herself for six months, and try to claim again. Meanwhile, hopefully The Funky Orchard will provide enough to live on. So please! Please support her; spread the word, and see if there are any items that you would like to buy for yourself or for someone else with Christmas coming.

How to wreck someone's life

I think most of my readers will agree that M.E. is real. You may not all agree over whether it is psychological or physiological. However, NICE guidelines, and the WHO agree that it is a neurological condition. The NHS is supposed to follow the International Consensus Criteria in diagnosis and treatment of M.E.. This is why the following story breaks my heart. I've spent a little time talking with this gentleman over the last few days, but there is no way I'd be able to do him justice. As such the following is his story told his way.

I've had a wide range of symptoms that got diagnosed as ME back in the mid 80s. Symptoms were more acute then, and - bar a short stay in a psych ward when the doctors could not find a cause - I managed for years, with pacing, though I was never well enough for a job other than volunteer work. About 3 years ago symptoms started to get crippling, with severe unexplained chest and abdominal pains after even moderate exertion, so I went back to the NHS for help, but after gastro exams and blood tests came up with nothing, I was given no option but to see psychiatrists, who would not listen to my reasoning or read references that might point the way to more specific tests, but just chose to brand me as a hypochondriac.

Once given this label, even my friends stopped believing in me, and got fed up with regular trips to A&E where I was scolded for my pain rather than having it properly researched as I begged to be done. In the end, when chest pain got so bad I could only roll about in agony, I was admitted into the psych system 'for observation', with the promise that if they could not help they would pass me on to an ME specialist.

They broke this promise and decided to section me in a ridiculous effort to cure 'hypochondria' with antipsychotics. As by this time, I had split up with my girlfriend, and the council had declared my own house unfit, I had nowhere to go, so did not oppose the section. That was nearly 2y ago. My family have been gradually getting my house into what the council deems fit condition, but the NHS has only stood by waiting to discharge me rather than make any effort over my health, so when I am finally at home, I will be completely out of the system and have nowhere to turn for medical help, after having my life totally wrecked by the psychiatrists, on top of my still worsening ME.

My sister is a journalist and did put some pressure on the PCT and GP practice and local MPs, but this only succeeded in getting me moved from the acute psych lock in facility to this open 'recovery' unit.  Nobody is able to fight the NHS and make them seriously look for what is making people ill, and doctors are actually offended when you ask that they should do so.

My life has been wrecked by the system and circumstances several times over, and each time I've dared to think things were beginning to look up again, I've had all my hopes and dreams dashed.

Please understand that he has told this story time and time again. He has become a dab hand at keeping it concise. As such the story as he tells it does not portray nearly half the sadness, emotion, and loss, the desperation and sense of betrayal that has been going on for decades.

He has been dumped in a psych ward, and basically forgotten. Sure, he has food, water, and a roof over his head. The basic rights promised to animals; so the RSPCA would have no problem with this. Well, I do. I have a problem with someone being treated so badly that they go in to the NHS in a bad condition, and 20+ years later they are in a worse condition. 

M.E. is not a progressive condition. It is not an illness that you expect to get worse. It can get worse, but it is not taken for granted that it will. When under full time hospital care you would kind of expect for patients to improve. Yet he has not improved, he's worse. He's been treated as if they are simply waiting for him to ... what ... die? Miraculously stop being a 'hypochrondriac'? Why is he in this mess of a system when their attempts at treating him have failed? Is it totally impossible for them to consider that they were wrong, that he may not be a hypochondriac and actually has an illness that needs proper treatment? Don't be mistaken, naively believing that being in a psychiatric hospital a patient is regularly seen by doctor's, nurses, and therapists. The truth is that one only sees such medical personal at rare case conferences.

In the 80s, when he first became ill, the understanding of M.E. was very different. When the guidelines changed, why was his treatment not changed? In over twenty years, why has he never had full body MRIs, why has he not been tested for systemic inflammation as per Fibromyalgia? Why has he been abandoned? It's hardly surprising that he's depressed.

I know he's not the only one. I consider myself lucky that I was left to rot in my bed when my condition was so severe. One of my best friends, last year, was admitted to hospital for five months for treatment of M.E.. Her ward too, was a psych ward. She too received no treatment. I'm glad she was released. While in hospital she lost her accomodation, her cat, her carer. So she was released into an unfamiliar world, with no help. I was too far away, and at the time, too ill. She came out of the hospital malnourished. I can't help wondering if this other friend of mine is also malnourished? How does the medical profession expect people's bodies to recover when malnourished?

It fills me with sadness. It is so frustrating that I cannot help him. All I can think to do is raise awareness of this man's plight.

Frustrations of M.E.

When I asked people to share their frustrations of M.E. one of my friends said to me that her whole life is a frustration, that I can share some pieces from her blog to illustrate how difficult it can be.

Her blog can be found here.

Still not found my mojo, am teetering on tearful at times. This mind-numbing continual bombardment of pain and exhaustion has left me feeling decidedly flat. Devoid of any other feeling.  Not depressed, not elated, not anything.

I want to say stuff, I want to post on facebook, or comment on stuff, but on the whole I know what I want to say but then can't be bothered to finish, or can't quite decide how to say it, so I'm just like "what the heck I can't be arsed" and deleting it.

And now I am going to finish as I can't be bothered to write anymore. My body and brain are, whatever, I don't even know what I was going to say so I can't (oh god that's it I'm lost for words).................

~ o ~ <<< 0 >>> ~ o ~

Well another week has passed. A week of occasional social activities, followed by wallops of payback and pain. A week of sleepless nights followed by two nights of successful slumber (which strangely has left me feeling more sleepy during the day).

This is the normal routine now. Just trying to have a life, to know that you are going to have to store up reserves for a simple trip out for a couple of hours and know that you'll still be left owing after. To know that if you manage one type of pain, you can bet that another type of pain will be ready to come bite you on the arse. To be sure that the more tired you are, the more likely it is that you will not be able to sleep a wink, like kicking someone when they are already on the floor. This is life with ME, it's a constant robbing of Peter to pay Paul.....

So here is the point where I was going to write about the positive things in my life. They are definitely still there, just right at this minute I have not got the energy to put them into words. I am sooooo sleepy, and feeling nauseous and my back is hurting again. So I am going to post this right now, and perhaps when I've had some more sleep, I will feel like being positive again.....

~ o ~ <<< 0 >>> ~ o ~

Oh how the weeks are flying by in a blur. Literally. I can barely remember what I was doing yesterday, and trying to recall last week is like trying to look at an out-of-focus picture - you can just about see a vague outline of something or other, but you're not sure what it is, but it has a familiar colour to it that invokes some memory or other that you just can't put your finger on.

I have been trying to keep a diary. This is for various purposes, one being to try to remind me what I've been up to, how I've been feeling, how many good or bad days I have.  What, however it has been mainly illustrating to me, is how many things I forget. It is the most common word in my diary. Here's just a selection for you:-

Jan 15th (day one): Forgot to write diary.... (!!!!!)
Jan 16th: Forgot to write diary.
Jan 17th: Got GP to fill in the form for hospital which I forgot about the last time I saw her. Forgot to ask for a sample pot though. / 8pm started to prepare casserole for tomorrow, but wasn't able to finish it as I had forgotten that I'd just taken a sleeping tablet.
Jan 18th:  Carried urine sample around the house so I wouldn't forget to take it to pre-op appointment. Remembered to take it with me. Left it in the car.
Jan 19th: Forgot to write diary.
Jan 20th:  Forgot to take my morning tablets, remembered in the afternoon.
Jan 21st: Forgot to take morning tablets, remembered after lunch.
Jan 22nd: Forgot to take morning tablets, remembered them about lunchtime, then forgot to take them again. Managed to have them at teatime.
Jan 23rd: Forgot to ring grandma, remembered at 10pm. Then realised I had forgot to ring DWP and the housing association as well.
Jan 25th: forgot to write diary
Jan 27th: forgot to write diary
Jan 28th: forgot to write diary
Jan 29th: tried to recall Friday and Saturday as hadn't remembered to write diary, but memory vague. Can't remember......

Well you get the gist of it. I could go on. It does go on. Much the same. In fact this very week (now I have started looking) I realise that since last Sunday, I only managed to remember to write my diary once, in the middle of the night on Thursday. I couldn't even remember enough to fill in any of the intervening days, apart from Monday morning, which I can remember clearly as I was supposed to be going in for surgery which was cancelled at the last minute.

So as you can tell, I have a memory problem. I am only 43. My life as it now has become consists of one big blur of stuff that I have trouble even recalling half the time.  And I can't even remember to write my diary to remind myself of the things I can't remember.

I will say goodbye for now, I will try to write again soon, but I might well forget to do that as well.

Give us a break!

I let out a slow tired sigh as I sat down to type this blog piece. There's another one! I ask myself why it is that there are journalists so ready to spread hate about M.E.. I don't understand it. One of the comments made me sit back and wonder though; M.E. is today's AIDS. Can that be true? I remember the hide-under-the-table attitude that went with AIDS. Is that how people feel about M.E.? I haven't noticed it being that bad.

This article is written by another delightful journalist, by the name of Damian Idiot Thompson. In it he makes a few claims, namely that the militant wing of people with M.E. are attacking Max Pemberton, that M.E. and eating disorders are related, and that a colleague of his diagnosed with M.E. obviously doesn't have M.E. because he is actually ill ... nice! Rather oddly though, most of the article just seems to be telling the world that social media enables like minded people to work together. I thought we knew that. Maybe he's a bit behind everyone else.

So, my take on his article, apart from thinking he's a first class moron who just wrote it to make a quick buck without actually doing any research, is that he hasn't even bothered to read Max Pemberton's article, which supposedly inspired his. He seems to be saying that he's defending Max because of this huge number of people who are attacking him, mentioning how Max's home security has been threatened. In fact, Max's article itself mentions his home security in reference to his previous article. Max also tells us that it was only about 200 people worldwide that were attacking him.

Personally, I've never ever read of any overlap between eating disorders and people who suffer from M.E.. BUT, everything overlaps everything doesn't it. There's a huge overlap in the number of people who keep pet rats, and also have M.E., but I'm not going to suggest that rats cause M.E.. There's an overlap in people who drive cars and people who wear bobbly hats, but that doesn't mean the two are related either.

He starts off by saying:

"The article you’re about to read will almost certainly be referred to the Press Complaints Commission. I’ll explain why later."

I'll be surprised if it does to be honest, as it's such a naff article. It kind of sounds like he wants it to be though. Just to show how badly the article is written, he doesn't actually go on to "explain why later" in the article either.

So why am I writing about it? Because I am overwhelmed by the response it has received. For once I have actually been able to log in to the site and post comments. My first comment was in reply to his claiming that journalists won't approach the subject anymore; I pointed out that Sonia Poulton does, and linked to her fantastic article. My comment was removed. Presumably linking to other journalists is a no no.

There are a few ignorant trolls who are deliberately stirring up trouble, but I'd like to share some of the comments with you, with permission of course (I am still awaiting permission for some of them).

'It's safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade'

Carly Maryhew said:

I'd like to clarify a couple things.  There's a common question regarding ME patients commenting on articles like this one: "If you're so fatigued, why are you posting so much?" Most of us are not particularly fatigued, though we have ME, of which fatigue might be a symptom.

There are two debilitating symptoms which might be interpreted as fatigue.  The first is Post-Exertional Malaise, which basically means getting very sick for days or weeks after a normal or even very minor amount of exertion.  Typing takes very little muscular effort, and any but the most severe cases can handle some of this.

The other symptom is Orthostatic Intolerance.  This means we can't handle being upright very well, as our blood pressure will eventually do very funny things that can cause fainting or general inability to think and function.  This is easy to diagnose and usually treatable, but that doesn't happen in the UK (or most other places) due to general ignorance.  Orthostatic Intolerance  can keep people with only mild or moderate PEM from working at jobs where little exertion is required, such as doing data entry in an office.

Orthostatic Intolerance keeps me housebound, and on two horrible occasions, bedbound.  It does not prevent me from typing, and in fact I'm more clear headed when bedbound because I can't even try to sit up for hours at a time.  Lying down does make typing uncomfortable, however, so I don't do much of it when bedbound.  And as long as I don't go crazy and try to play computer games or write a novel, and take breaks, I can type a decent amount before my muscles have had enough.

My hope is to get my Orthostatic Intolerance treated so I can be somewhat functional again.  Then maybe I can think clearly most of the day, not need to lay down every couple hours, and even slowly shuffle around the grocery store again.

Another point: this disease ceases to be invisible if we push ourselves hard enough.  But we work VERY hard to avoid getting to that point, because it invariably results in Post-Exertional Malaise or even long-term worsening of our ME symptoms.  When I've been upright and/or walking too much, some of my leg muscles cease to function - I can still walk, but it becomes extremely jerky and awkward.  If I keep pushing, more muscles wear out temporarily, and my leg or legs cease to function as needed.  It's an extremely disturbing sensation to be trying to lift your leg and for it not respond at all.

Thank you Sonia

A friend of mine, the lovely Sarah-Louise Jordan, has written this beautiful poem in thanks, to Sonia Poulton, a journalist at the Daily Mail who has written another fantastic article on M.E.

Nobody heard our voices in the shadows
Or saw the flare we sent into the skies,
They didn't see the ground beneath us vanish,
They turned the truth we told them into lies

We lost the strength to dance, except in spirit,
We lost the strength to sing, except in thought,
We had to learn to make hope out of nothing,
In spite of all the monsters that we fought

But on the lonely road we met each other,
Our love and friendship kept our dreams alight,
We found a way to laugh and in the darkness
The stars of our compassion filled the night

And then you joined us in our epic battle,
You heard our voices and you saw that flare,
Because of you the sun will bring the morning,
Our day will come at last, because you care

I can relate easily to the poem. When you have M.E., you lose everything, but because you look just like everybody else, very few people actually realise it. Your energy is sapped as if by some invisible force. You may become sensitive to sound; you can't listen to music or sing. No one knows what causes M.E.. No one has a treatment for us. It feels as if we're locked away in a cupboard none of the medical community want to mention. So when someone comes along and opens the door to that cupboard it feels amazing.

Sonia actually says in her article:

"The over-riding message I have received has been one of gratitude. I can tell you that this is something of an unusual experience for a journalist writing for national newspapers. [..] Many of these voices – including some of the greatest scientific, legal and academic minds in the ME world – have echoed a collective sigh to see their illness validated in the media."

She gets it. She totally gets it. She describes the exhaustion and pain, the horrible treatments we're expected to accept despite them making us three times worse. She understands how we feel we've been forced to live in denial. She knows that we can die from M.E., and that people with M.E. are aware of this despite our doctors seeming not to be. And she recognises the frustrations of the misinformation that seems to be everywhere.

I don't know what triggered Sonia's interest in M.E., but she really does understand. Please have a read:

ME is no more 'in the mind' than Multiple Sclerosis. When is the world going to get that?

Max Pemberton to champion our cause?

Max Pemberton has written a second article about M.E.. 

Why few dare tackle the psychology of ME

From some of the comments readers have left, I think I am rather glad that I missed his original article. He describes how he received torrents of hate mail following his original article. But since he starts this article by making the extremely uneducated statement that because XMRV and pMLV have been ruled out as causing M.E. that there is no biological agent, he is obviously inviting such hate mail again.

Funnily, reading the comments readers have left, he hasn't actually received the hate mail that he seems to be seeking. I've not seen one single comment supporting either him or his article, no M.E. haters, just a lot of people explaining to him how uneducated he is and providing some fabulous information on M.E.. The comments are not moderated; my own comment appeared on the site the second I posted it, so it isn't as if any M.E. hate is being hidden. I'm quite impressed by this.

He is a supporter of the 'M.E. is psychological' argument. His evidence seems to be the hate mail both he and Dr Wessely received. It seems to be a pattern of such thinkers that they completely ignore all the studies showing physiological evidence that M.E. is a neurological condition.

He is right in that people with M.E. are scared of M.E. being pegged as a psychological illness. He seems to think that this is because of the stigmatism psychological illnesses have though, when in fact it is because we can feel that it is physical. This just goes to show his own thinking on psychological illnesses, and that he's arrogant enough to presume that over 250,000 people think the same way that he does. Personally, I have absolutely no problem with admitting I have psychological problems. I've had severe depression and a breakdown in the past, am coming out of a depression again now. I have anxiety and PTSD, elements of OCD. It's no problem for me to say this. I do have a problem saying that M.E. is psychological though. I do not believe it is. I can feel the difference.

Doctor Shephard is the perfect example of a convert. He was a believer that M.E. was psychological, until he became ill with it. He has described the transformation to his life and his thinking in various places online.

Max does actually point out further into his article that the hate mail he received was perpetrated by only about 200 people, many of whom didn't even seem to be in the UK. I believe he placed this far into the article on purpose, as people who just read the first couple of paragraphs will miss it; their overall impression will be that all biological agents have been eliminated as possible causes of M.E.. He doesn't explain that there are over 250,000 M.E. sufferers, 200 is a minuscule portion of these. He's used the behaviour of these 200 people as evidence that we are all mentally ill. This is not particularly rational behaviour in itself.

I find it amusing that at the end of the article he says he "has a deep sympathy for sufferers of M.E.", that he'd "happily champion their cause" but that because of his experience he doesn't wish to be involved. (So, no, he wouldn't happily champion the cause). After writing one hateful article on M.E., and this one smiting many M.E. sufferers, it seems strangely ironic that he would make this hollow offer. It would be amusing for someone of his vein of thinking to champion the cause of M.E. though. Assuming such a role would mean working with M.E. sufferers, meeting with people regularly, seeing what we live with and go through on a daily basis. I don't think it would be long before he changed his mind about it being psychological.

ME / CFS Research Newcastle

ME / CFS Research Newcastle has created a page on Facebook, which you can follow here:

ME / CFS Research Newcastle

They have today posted a summary of the study they have proposed to the ethics committee. It is thus:

Chronic fatigue syndrome (CFS) occurs in 0.2-0.4% of the population and currently its cause is unclear. Abnormality of the autonomic nervous system is recognised in 3/4 of CFS sufferers and we believe that it underpins many of the symptoms that are characteristic of CFS. Autonomic nervous system dysfunction is characterised by symptoms of dizziness on standing, symptoms present in nearly 90% of people with CFS. Despite this, why autonomic dysfunction occurs in people with CFS is not understood and as a result treatments limited. This study will explore what leads to autonomic dysfunction in CFS particularly whether it occurs because of abnormalities in centres in the brain that control the autonomic nervous system, or, due to a peripheral volume or vascular problem. In non CFS diseases, autonomic dysfunction has also been shown to be associated with memory and concentration problems (cognitive impairment). Over 80% of those with CFS describe problems with memory and concentration, so this study will also explore whether there is a relationship between autonomic dysfunction and cognitive problems.

The programme has two phases:
1) we will use new ground breaking brain magnetic resonance scans that will allow us to study brain function in CFS and how this relates to problems of blood pressure control (autonomic nervous system) and memory and concentration (cognitive function).
2) we will explore whether cardiac or blood vessel function might contribute to autonomic dysfunction in CFS.

As it happens, I was going to speak to my doctor tomorrow about the problems I have when I stand up, so was interested to see that this is part of the proposal. (It also told me that there is no treatment for it, so little point in my discussing it with my doctor after all). I did actually think that it was already established that cardiac or blood vessel function contributed to autonomic dysfunction; it's listed in the International Consensus Criteria for M.E. as 'Orthostatic Intolerance'. So I shall look forward to seeing the results on this.

I will also be very interested to see what the study shows regarding concentration and memory.

Newcastle may be a long way from me, but I do wish I could volunteer for the study.

Happiness Barometer by Debbie Deboo

Debbie's a friend of mine. She posted a link to one of her blog posts on Facebook today, so I snuck over and had a snoop. Let me share it with you:

I found some old photographs the other day, pre illness. In some of them I’m sitting in a festival field with purple hair and a paper cup of beer in my hand surrounded by crowds. I have a big smile on my face. I post them onto Facebook and someone remarks ‘you look so happy’.

That got me thinking, yes of course I am unhappy with my illness but I hadn’t really realised the extent of how much it showed in my face and how my eyes now didn’t sparkle and my smiles were much more muted. I don’t set out to look unhappy and in fact I don’t go around feeling miserable, I think I’ve just fogotten what it is like to be SO happy. To be with friends, enjoying myself with beer and music, which of course never happens anymore.

It got me thinking about Richard and how his happiness must have been affected, he was sitting in that festival field too, smiling. He doesn’t go to festival anymore, and he isn’t ill. he stays with me….

I guess our barometer of feelings is based on a sliding scale and that sliding scale adjusts…..

I don’t feel particularly unhappy but maybe I’ve forgotten what happiness feels like.

It had me in tears. I had such a similar experience recently. I scanned all of my old photographs a couple of years ago. Then last year uploaded some to Facebook. The husband of a friend of mine was obviously looking through them. I've known him about a year, met him properly just the once. He sent me a private message saying simply 'What happened to you?'. Asking what he meant he asked me why I used to look so full of life, even despite being depressed, but in my more recent photos and when he met me that spark is gone.

That's M.E.. Unfortunately that's what it does to us. 'What happened to you?' is a question that will remain with me for some time to come.

Fibromyalgia is a joke?

Disagree with the title of this blog post? I do. If you're on Facebook, please go to this page and report it:

STOP the Whining!!! Fibromyalgia is A JOKE

How to report a page on Facebook:

• Next to 'message' click the little arrow.
• Select 'report page'
• Select 'hate speech'
• Select 'targets people with a disability or disease'
• Click 'continue'
• Check 'Report to Facebook'
• Click 'continue'
• Click 'ok'

Just a sample of what the delightful individual who made the page has to offer:

Is Fibromyalgia a disease with a physical pathogen, or merely the result of depression and stress? The pain may be 'real' but the cause may be literally all in your head.

One sure way to stir up controversy is to say that Fibromyalgia or Chronic Fatigue Syndrome or some other illness that has no physical symptoms (other than reported pain) is a made-up illness. People will get incensed and say, "Our Pain is Real!"

And that may be true. But pain does not occur in your joints, your muscles, or even in your nerve endings. No, it occurs in your mind. Even if someone saws your leg off with a chainsaw, the pain doesn't occur in the leg, but in your mind, where you actually feel pain. Similarly, you do not "see" with your eyes, but rather receive light signals. It is the mind that assembles these into images that we see.

But mental illnesses have a stigma in our society. And depression is one of those illnesses where we tend to blame the victim. "Cheer up!" we say, as if it were a cure. And people are thus reluctant to seek help for depression, convinced it is too trivial a matter to bother a doctor about.

And as a result, it is not uncommon for a lot of maladies to appear in the mind - psychosomatic illnesses. And these do occur with regularity, particularly among depressed people or hysterical teens. And some folks often make hay from these things - doctors or political activists with an ax to grind.

And the sufferers from these illnesses do enjoy the attention they get, and are comforted in having an official diagnosis of their ailment. After all, just "getting too old" or "drinking too much" or "being depressed" are not as concrete a diagnosis as a mysterious disease without any physical symptoms - other than pain. The mysterious disease has a name and a cache. And if anyone calls you out on it - that it might be fake - even the Doctor who first gave it a name - you can go on the offensive and call them all sorts of nasty things. Just wait for it...3.....2.....1.... FLAME!

He is right. It's made me very angry. I do not suffer with depression, so I disagree very strongly that FM or M.E. / CFS are physical manifestations of mental illness. I have suffered from depression and anxiety for years in the past, and yes, some of those years were while I was ill. I had a breakdown in 2001. I am not ashamed in the slightest to admit any of that. It says something about the author of the page that he assumes that every single person with Fibro would be ashamed to admit they had any psychological conditions. A few of my Fibro friends do, and they're not ashamed to admit it either.

I am insensed that someone has made this page. I do not understand what they stand to gain from it. I am assuming that there must be someone in their life who has Fibro, and they are jealous of the attention that person, or those people, get. He has talked about enjoying the attention from the illness after all. Personally, I do not get any attention from the illness, so I don't really understand what he is talking about there.

This is hate speech, plain and simple, and it should be squashed.

Frustrations; Fibromyalgia has changed my life

This friend of mine has M.E. and Fibro. She struggles every day, and it's heart breaking to watch.

I can't walk without walking sticks, I can't cook a meal for myself as its too painful to stand to prepare it and the pots and pans are too heavy for me. My memory is so bad I forget who I am on a regular basis and have caused accidents on many occasions due to forgetting I had left a tap running, or food cooking. I spend a lot of time sleeping, badly, and still wake up feeling like I haven't slept in months. I have pain in every single joint in my body and am constantly exhausted.

I have Fibromyalgia and it's changed my life completely! Yet still I keep on fighting! The support of my friends and family is sometimes the only thing that keeps me fighting and I love you all for it! XXX

Specialist Update

Before I moved away from my lovely wonderful GP he wanted to make sure I was on the right path to being treated, to improving. He had tried referring me to a rheumatologist, but it had proved fruitless in terms of treatment for M.E.. So we sought an actual M.E. specialist, and we found a clinic about an hour away from where I was living. The Chronic Fatigue Clinic at the George Eliot hospital in Nuneaton.

I had an appointment with them in March. It upset me. The doctor I saw told me that I had been ill for so long that it was unlikely that there would be anything they could do for me. I came away feeling as if I was being blamed for not being referred to them sooner. I wasn't given any advice or treatment, so didn't think it would go any further.

However, a month or so later I was called in for an adreno-cortisol test. I was under extreme stress at the time, so the doctor conducting the test expected my results to be very strange, and that he would need to repeat the test. I received a letter through the post informing me that they were normal. I was once again disappointed. I know it is strange to hope that something is wrong, but as far as I'm concerned, if there is something wrong they can treat it, which means there are less things wrong with me that are being untreated.

I was then surprised to be called in for a second appointment with one of the doctors from the clinic. The appointment was last Friday. The letter didn't tell me why I was going, so I didn't know what to expect. My appointment was with Dr Patel.

Dr Patel, at the moment, is my hero. He disclosed to my partner and I that when I had gone in for the adreno cortisol tests they had also performed a number of blood tests. He looks at the results of these tests in conjunction with one another. For myself he found that while both my thyroid levels are within the normal range, one is high, and one is low; that in itself is not normal. It means that one thyroid hormone is not being converted properly into the other. As such he has changed my thyroid medication to try and overcome this problem. He also found that my Vitamin B12 levels are low, so he has prescribed B12 injections.

I would like to explain something here. Where I have described on M.E. groups what Dr Patel has so far done, the reaction I have mostly had is "My GP did that ages ago!" or "That's how I was diagnosed too!". I have been ill and diagnosed since 2002; he is not re-diagnosing me. The way he does these blood tests is not what our GPs do. He is not running routine bloods for a start, but also the way he looks at the results is different. Most of our GPs do not go through the results and explain them to us. He looks at how they work together. We all know that different parts of the body affect each other; similarly if one thing is wrong in the blood tests it will be affecting other things. My thyroid levels being the perfect and most simple example. He is also familiar with the fact that people with M.E. have absorption issues, which is why he prescribed Vitamin B12 injections. I am already taking multi-vitamins and minerals at the advice of my previous GP because he suspected I had low B12 and Vitamin D, but obviously I still have low Vitamin B12 despite taking 100% of the recommended daily allowance on a daily basis.

One thing the rheumatologist did do when I saw her was to prescribe me with Tramadol for pain. I have found since seeing her that it doesn't only help me with the pain, but it also takes away that extremely heavy feeling we get in our limbs, and clears my head so that I can actually think clearly. Well, since moving GP, my new doctor keeps reducing the dose of Tramadol. He doesn't like the drug, because it's addictive (and because he didn't prescribe it for me). So I asked Dr Patel if he could sort this problem out for me. He is going to; he has re-prescribed it for me at the dose the rheumatologist set, and is going to ask my current GP not to reduce it again. (I don't think this will have any affect on my GP though to be honest).

I also asked Dr Patel if I might try Gabapentin for sleep, as I've heard from a few people with M.E. that it gives a natural sleep, unlike sleeping tablets which turn us into zombies. He has indeed prescribed me with Gabapentin, and he mentioned that it is recommended for M.E..

I have come away from him very happy. I am determined to do exactly as he has said. I will be sticking to this medication regime religiously. I have absolutely no right to complain about being ill if I am not doing as the doctors who understand the illness tell me to.

Frustrations: The mother of an M.E. sufferer

When I invited people to share their frustrations about M.E. with me, one of my friends came forward to tell me that her son has M.E.. I hadn't previously known this. This is what she had to say...

ME can be inherited........! that awful realisation that you’ve passed something awful on to your child!

I’ve never actually been diagnosed with ME – I’ve suffered with most of the symptoms though since I was 19. My own doctor doesn’t like labels – and after being diagnosed (by another doctor) with Fibromyalgia ten years ago (at 34), the need to have it confirmed lessened. Friends with ME tell me I have it, and I have to say I think I probably do too, but a lot of the meds they use are the same, and the extreme exhaustion of both is very similar – so it matters less to have the ME label.

I know there’s nothing I could do to stop it, but knowing that my son (then 16 and just finishing his exams) had contracted the horrible illness that blighted my adult life and that he got it because I’d had it was very hard to deal with. Interestingly (!), his father has Fibromyalgia too..... so my poor son had no chance to avoid this pain – a lot of people suffer with both ME and Fibromyalgia.

My son is now 21, he’s been through college, a year of Uni and even parenthood whilst suffering with this horrid illness. College and Uni were hard – but they knew about his illness and gave him extra time to complete things – I had to help a lot too, especially with the written work; so most of his coursework was a joint venture – we joke that I too have a Diploma in Modern Music (or at least, the written part – I can’t play a single musical instrument!). Parenthood – well, that’s exhausting at the best of times – adding ME into the mix just adds a whole new dimension – we all help when we can.

The practical side of the illness (or at least the support of it) is straight forward – you know his energy has its limits and don’t expect too much. You do what you can to help, you make allowances and adjust.

Emotionally though it’s harder – maybe because I can truly empathise – but trying to keep him going when I’m struggling to keep my own ‘emotional’ head above water is so draining. There are certainly days when I will do everything to keep him going at a cost to my own health – not because he asks it, but because I’m his mum and that’s my job (ok, silly maybe, but it’s how I feel).

He doesn’t like people knowing he has ME – in fact it’s only his really close friends that do know. He feels that somehow he’s failed by having the illness – that they will think less of him (they don’t, I can assure you). But as his mum, that’s really hard to deal with – I’m pleased, of course, that he doesn’t use it as an excuse – but sometimes I wish he wouldn’t be so hard on himself – and would allow people to care and make allowances.

He’s my son – and I would do anything to take this terrible illness away – but we have to live with it, him and I – we don’t have a choice, do we?