Friday 31 August 2012

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.

Wednesday 22 August 2012

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?

Sunday 19 August 2012

Frustrations; how long have you got?

When I asked one of my friends with M.E. what her frustrations were, this was her response:

"Have you got 3 weeks to read it lol? Its the most frustrating illness I've ever come across. You can't plan, you feel like you're living on luck, you're in pain every day, getting benefits to which you should be entitled to is luck of the draw, you fight to get better which makes you feel worse, you feel useless when you can't even make a meal or string a sentence together. If you have a 'good day' (which is a term I don't like as I am rarely symptom free) its frustrating to try and not be 'normal' as you know you'll pay for it over the next few days. You worry about what people think if they see you out doing something most others take for granted like shopping as to other people you look 'normal' and don't look ill. Its difficult for people to understand how you feel...and if one more person says "Oh, I get tired too..I just....blah blah blah...you should try that" I'll possibly use some of my precious energy in punching them...if the pain in my arms allow it!!!"

Friday 17 August 2012

500,000 to lose DLA

Those of us who have been watching the tide turn are well aware of what switching from DLA to PIP will do. Benefit reform has been brought about partly because the government has painted a picture of those on benefits as being scroungers, malingerers, people who generally don't want to make an honest living ... the lowest of the low.

Public perception is that the benefits system is being reformed because of benefit fraud. Yet, the actual statistic for Disability Living Allowance fraud most recently released was 0.5%. Old Joe Blogs is going to look at the governments statement that 500,000 will lose DLA, and believe that 500,000 people have been claiming fraudulently. As such, I'd like to do a little maths with you.

DLA fraud = 0.5%
In Joe Blogs mind, 0.5% = 500,000
In order for that to be the case, the total number of people claiming DLA would be 100,000,000.

So, dear Mr Blogs, before you jump to any conclusions, please think about the reality of more people than make up the population of the UK being able to claim DLA. The government is not just targeting benefit fraud, it is targeting people who are genuinely sick and disabled, and taking away the little amount of money they rely on.

DLA is supposed to enable people to live a life contributing to society, whether that be by working, or simply by being able to shop in their local stores instead of online. By removing so many people from DLA (or PIP) the system will crumble. People who have relied on Mobility cars will no longer be able to get to work. People who were able to go into their local high street throughout the day will no longer be able to do so ... more shops will close!

It's a small minded way of recovering a tiny amount of money, that could be so easily regained if the big mouths, further up the ladder, actually paid their taxes.

Wednesday 15 August 2012

Frustrations; my friend has M.E.

I invited people to write for me, what their frustrations are regarding M.E.. My first response is from a lady whose best friend has M.E.

"My Frustrations on having a friend with M.E - By Annie

I get annoyed that I think they can do everything I want them to when I want them to do it, only for them to say they can't.

I get upset that by them trying to do what I want them to do, they then get exhausted and need to recover before I can get them to do anything else.

I feel guilty that they feel they have to prepare themselves mentally and physically just to be able to cope with me being with them.

I feel like they don't want me around when I have any bugs because they know they can't cope with any extra illness.

I see a friend who is talented and clever but unable to have the strength to show the world what they could do because a 'good day' is just not good enough to cope.

I feel upset that a good person is suffering and there is no way of having an energy donation like a blood doner could donate blood

I wish that other people, who like me originally had considered the side effects of M.E or CFS as just being a state of mind from people with no routine in their life, could see that it is medical and no one can just snap out of it just by setting an alarm clock for the same time each day."

The frustrations of M.E.!

Most of my closest friends have M.E.. Many of my acquaintances have M.E.. I invited everyone I know to write me a piece about their frustrations with M.E..

I also invite you to write your frustrations. You might have M.E., or you may be friends, the lover, or a parents of someone with M.E., of you may have read about it. Whatever your relation to the condition, I do not mind, I would like to hear and share your frustrations about the condition.

What you write need not be long, yet there is no limit either. You can be named, or remain anonymous. I will however correct English that I consider to be hard to understand.

Please email me if you would like to be included: olana.voljeti@gmail.com


You know what can cure M.E.?

When you have M.E. everyone thinks they know how to cure you. Some people are saying it because they care, but others do it because they just like to look better than you, more knowledgeable than you in your own condition, then dismiss you as a kook when you say their methods have been tried and failed. They seem to think they know better than doctors a lot of the time.

Debbie Deboo created this beautiful, gentle, video approaching this fact. Give it a watch, and be mindful. For example, if M.E. could be cured with diet, do you really think we would not follow that diet? Would we really choose to remain ill if it was so simple?

There are drugs being developed and tested that might work. I am hopeful for the future.




Thursday 9 August 2012

Radio Interview on M.E.

The fantastic Debbie Deboo was interviewed on U105Radio yesterday regarding M.E. and her Glamsticks.

Unfortunately she has just had to give up Glamsticks, due to the affect on her health, but you can still order them I believe; they are walking aids that have been decorated uniquely, because standard walking aids can be very bland and almost depressing.

She gives a beautiful and concise interview. I imagine she must have been exhausted afterwards. Way to go though Debbie!!!

Monday 6 August 2012

The truth about Welfare Reform

I really haven't got the brain to actually write much about this article. Sonia, as usual, has written beautifully. Perfectly. She's pretty much summarised everything I've been trying to get at in my posts regarding welfare reform. Please read it. Please share the link for this article with your friends, family, colleagues, etc, and anyone who is touched by it, please sign / ask them to sign the document linked in my previous post. It's a desperate situation, and I'm desperate for everyone to know ... and those who need to, to change their attitudes. So, here's Sonia's article ...

Suicide training in Job Centres? Cancer patients scrubbing floors? Welcome to Cameron’s Brave New World


So, the Welfare Reform Bill - the part that refers to sick and disabled people - limped bruised and bloodied over the finishing line in Parliament last week. The various acts of treachery and betrayal it contained making its final journey into law once it has been granted the Queen's royal assent.

It was inevitable, really, and disability campaigners who, for the past two years, have fought feverishly, and quite literally at times from their sickbeds, to oppose it, resigned themselves to the fact that nothing short of a Biblical-type miracle would reverse their fate.

However, it is only now that the full implications of what these reforms - or brutal acts of savagery as I prefer to call them - will actually mean to millions of seriously vulnerable people in our country. And it is an ugly realisation.

This is how I see it. In the life of most every politician there is one, or several, events that mark out their ‘D’Oh moment. This is not based on severity but on a feeling it should not have happened at all.
David and Samantha Cameron themselves claimed Disability Living Allowance for their child

Brave New World? David and Samantha Cameron themselves claimed Disability Living Allowance for their child

For examples: Nixon - Watergate. Kennedy - Marilyn. Major - Edwina Currie. Tony Blair - Iraq. You get my point?

Well here’s my ‘D’oh moment prediction for David Cameron. He will be remembered as the Prime Minister - without a mandate, remember - who attacked the sick and disabled of our country with a vehemence beyond human comprehension. And when you think that he had a disabled son who tragically passed two years ago, well, then, it beggars belief even more so.

So, to bring the story up to speed.

Margaret Thatcher and Tony Blair’s Governments set the blueprint of the welfare reforms that David Cameron has just forced through Parliament. And when I say forced I mean the type that requires extraordinary levels of subterfuge and manipulation to shoehorn into place.

He ignored panels and focus groups, charities and campaigners and he overturned the Lords' by invoking an archaic law of “financial privilege”, which allows the Commons the last say on money matters.

Such was his unstoppable zeal to push through reforms - contrary to all advice, personal and professional - that you had to wonder if it was a psychological issue driving him on.
Talk to any disabled or sick person right now and there is a word that crops up more than any other, a running thread central to what they are feeling. It is this: fear

Talk to any disabled or sick person right now and there is a word that crops up more than any other, a running thread central to what they are feeling. It is this: fear

Perhaps denied grief at the death of his disabled son. Bereavement affects us on an individual basis and there is no guarantee that it will manifest in logical ways.

So these cuts will now become law and, as a nation weeps, the details are sorrowful when applied to reality.

Here's an example. Any disabled or sick person who has been given more than six months to live - and is unable to financially support themselves - will be sent out to work. If they refuse, or back out of a scheme, then they will be subject to benefit sanctions.

This, it must be noted, is extraordinarily punishing towards disabled people when we consider how DWP boss, Chris Grayling, treats others involved in 'Workfare' type arrangements.

Consider, if you will, how he was forced to back-track last week following pressure from campaigners and businesses. After a summit designed to get more businesses on board the Workfare bus, he announced that he would remove the threat of benefit sanctions for unemployed young people on job seeker allowance who drop out of the scheme.

Wow. In what world can young, fit people be given protection that we deny our most vulnerable? That's more suited to an Aldous Huxley script than real life.

Next up in the reforms will be an increase in multiple testing of patients, including those with Alzheimer's and Multiple Sclerosis, to see if they are fit for work. They will be tested repeatedly. It will cost a great deal of money to administer and it will wear already sick people to a pulp.

And as for children who dare to be born disabled, well that assistance previously available to them has been wiped out in Cameron's Armageddon on the poor.

Sue Marsh, one of the co-authors of 'Responsible Reform - The Spartacus Report' - which launched a worthy counter-attack to the Coalition's WRB measures said: "We begged for £11 Million to protect profoundly disabled children into adulthood, but nuh-huh."

And yet we, as a nation, manage to find millions of pounds to pay Cameron's army of advisers and assessors including the allegedly fraudulent activities of back-to-work company A4E which was set up by the Coalition's 'families czar' Emma Harrison.

Could we consider this? If this is really a cost-cutting exercise to fill the billion pound deficit, when is the Coalition going to start from within? The DWP spend over 25 thousand pounds per month on travel, hotels and stationery - surely there is something that could be curbed there rather than taking 20% from disability which, according to their own figures, only has 0.5% of fraud.

I'm writing this and I'm struggling to believe it at the same time, which is quite a conflict.

With all this insistence of paid employment for the terminally ill (despite the fact that we have almost 3million unemployed) it is no wonder that job centres, up and down the land, have been issued with details on how to handle suicides in their establishments. Something, apparently, they are anticipating rather more of since the WRB was voted in.

I think the expression ‘you couldn’t make this up’ is appropriate here.

Perhaps the aim is to finish off the sick and disabled sooner rather than later. Well that way, at least, you get to save on the medical bills of our increasingly privatised National Health Service.

After all, what use are such people to our society?

There is a notion, false obviously, that disabled and sick people make no contribution and only ‘drain’ the system. What short-sightedness. Such a statement assumes that only paid work has social value.
Legacy: Will Cameron be remembered as the PM who attacked the sick and disabled of our country with a vehemence?

Legacy: Will Cameron be remembered as the PM who attacked the sick and disabled of our country with a vehemence?

What about other contributions including volunteer work - from charity shops to hospitals and schools? These roles are frequently staffed by disabled people, too.

Ironically, a number of disabled people will now be removed from such vital community roles and placed in a Workfare scheme - free labour to private businesses - so that they may mop floors, wash dishes or clean toilets. Ain't life grand?

Disabled people, like the majority of people, want to work but they also have to take account of how their illness or disability will affect their working life. Unlike the able-bodied and healthy, they do not know which turn their well-being will take when they wake in the morning. Whether they will be able to physically climb out of bed much less make it to the factory floor.

People on disability benefit are not living it up. If only. According to the group Family Action, some families survive on less than two pounds per day. Quite a contrast when you compare it to the Peers in the Lords who receive 300 a day just to show up and then get to enjoy smoked salmon in the tax-payer subsidised cafeteria (cost to the taxpayer is a mere 1.44million a year. bargain). Oh how the other half live.

So where will disabled and sick have to turn to now in their greatest hour of need? Well they can forget the Social Fund because that was viciously axed in these reforms, too.

For millions of people, a Social Fund loan - yes it was repayable, it wasn't a gift - was the difference between sleeping on a bed or a floor. The MP's who voted to banish this have no understanding of such destitution and poverty. Not while they are able to subsidise the purchase of their country mansions with their parliamentary expenses.
Defending himself: Ricky, seen here in a photo he posted onto his Twitter page, said he never meant to use the word 'mong' to mean Down Syndrome

There are those who openly mock the disabled: Ricky Gervais's 'mong' comment says more about him than anything else

People are already impoverished and it is certain to get worse. I read one online disability forum where a woman with breast cancer and liver disease didn't know where she was going to get the ten pound needed for travel to hospital for an appointment.

Unlike David and Samantha Cameron, who claimed Disability Living Allowance for their child - and absolutely did not need to - many disabled now must adjust to seriously reduced circumstances since Cameron attacked DLA in the reforms and will replace with the patently detrimental Personal Independence Payment (PIP).

The transfer from DLA to PIP will remove help from 25% of those in receipt of the benefit now, despite the fact that this is a benefit that helps some disabled people to stay in work.

And therein lies much of the problem with these reforms. They lack joined-up thinking. They don't appear to have been thought through to a satisfactory end.

Take for example the perception within the Coalition, the DWP and the care services that everyone has a spouse and family to fall back on but that is not the reality for many people.

As a consequence of these cuts, more disabled people will find themselves in bedsits, or hostels or on the streets. There is a significant proportion of people with mental health issues and learning difficulties who find themselves in this situation already and it is certain to increase.

Well then perhaps it's time to resurrect another part of our history - seeing as David Cameron is clearly following a Dickensian blueprint for our poor - the workhouse. Yes, that testament to our proud, class-conscious society.

Talk to any disabled or sick person right now and there is a word that crops up more than any other, a running thread central to what they are feeling. It is this: fear.

Fear of losing their homes when they no longer have DLA to top up their Housing Benefit shortfall where, thanks to the previous Conservative Government, private rents are uncapped and extortionate. Fear of losing their carer because there will be no allowance for them. Fear of being bed-ridden for the lack of anyone to lend support. Fear of losing ramps and assistance to get in and out of the house. Cold fear that this feeling of being unwanted and excluded from society is how it is going to be for the rest of their days.
With all this insistence of paid employment for the terminally ill it is no wonder that job centers, up and down the land, have been issued with details on how to handle suicides in their establishmentsv

With all this insistence of paid employment for the terminally ill it is no wonder that job centers, up and down the land, have been issued with details on how to handle suicides in their establishmentsv

In internet circles, where many disabled campaigners congregate, names are bandied around of those who have committed suicide through fear of going cold and hungry and feeling that they are increasingly a burden to society.

At the last count there were some 103 names linked to such suicides and I have actually heard people say that they would consider suicide as a way out of this constant state of anxiety and despair.

What alarms me is how this dispassion towards people with disabilities appears to be spreading from the Coalition down.

There are commentators who openly deride disabled people (Rod Liddle's ill-informed and hate-inciting rhetoric - a type of drunk-sick on paper - in a tabloid was one, but he's not alone). There are also comedians who mock disability. Ricky Gervais' 'mong' impersonation surely says more about him than it does about anyone else (although to be fair, Ricky has since claimed this to be naivety and that he was unaware that the term was still used to describe disability).

There is also, according to recent figures, a 40 per cent increase in disabled attacks in the past year alone. Hardly wonder when the general public are constantly being goaded with the idea that we are 'mugs for supporting scroungers'. Talk like that tends to breed resentment.

And then there's this. An occurrence that should serve to alarm us all.

The British Medical Journal published a paper from Oxford University don Francesca Minerva, a philosopher and medical ethicist, who argued that doctors should have the right to kill newborn babies including those born with disabilities because, according to Minerva, a young baby is not a real person and so killing it in the first days after birth is little different to aborting it in the womb.

But here's what gives me hope. Ever since last week's rubber stamping of the Welfare Reform Bill, disability campaigners have begun a serious fightback and are preparing, like an army, to overcome this wickedness that has been wrought on them. Information is being compiled and exchanged, despite ill-health and disability I have never witnessed such a bank of people determined to overcome the odds piled on them.

Let us not forget, and despite the mainstream media's best efforts to convince us otherwise, this is not about the neighbor with the apparent bad back who plays golf at weekends (who can also be genuinely disabled but even disabilities allow for better days when activity can increase), but about some of the most horrendous acts against truly vulnerable people.

This may not affect you. Perhaps your parents, or yourself even, have a sufficient financial cushion not to worry about that. What an enviable position to be in.

But what about those less fortunate?

I believe - and I’ve 47 years of a colourful life to base this judgement on - that the UK is comprised of essentially decent people. Citizens who care enough to see beyond their own selfish existence.

The people I know don’t want to be - and neither are they - the type of people who turn their backs when the going gets tough. They actually seek a more compassionate life on earth where we are prepared to support and contribute to each others lives.

In is unconscionable that these disability reforms have been allowed to happen. To be fair, we all knew it was a Conservative agenda, but a Liberal one as well? Goodness how Nick Clegg can ever recover from this I do not know. My imagination is not that good.

So the Welfare Reform Bill, after decades in the making, has finally come to pass. Oh, how proud are we as a nation? We did it. Gave those sick and crippled unfortunates a good old kicking. Let’s give ourselves a collective pat on the back for allowing this to proceed. Makes you proud to be British, doesn't it?

Friday 3 August 2012

FM v M.E., what's the difference?

Last year I was diagnosed with Fibromyalgia. My previous GP had sent me to a rheumatologist, desperately seeking a specialist we could use to write me a statement for the DWP, as they would not accept anything written by him. The rheumatologist I saw was confused as to why I was referred to her, despite my explaining that there were no M.E. specialists in our area. My GP had hoped she would either be able to help or refer me further afield. (He eventually did this himself, as we know from previous blog posts). I only had one appointment with this rheumatologist. She diagnosed me with both Fibromylagia (FM) and hypermobility, and referred me for physiotherapy. She didn't explain to me what either condition means. My question ever since seeing her has been "What is the difference between FM and M.E.". No one, until today, has been able to give me an answer. I have several friends (all in the UK) who have the diagnosis of both, but none of them know the difference, and all identify most with the diagnosis they received first.

Today, a friend in the US, pointed me towards this page.
"A lot of people - even doctors - want to lump fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME) together, believing they're different manifestations of the same underlying problem. [...]

Similarities Between FM & CFS/ME


  • Pain
  • Fatigue
  • Sleep disorders
  • Irritable bowel syndrome symptoms
  • Chronic headaches
  • Association with Temporomandibular Joint Syndrome (TMJ)
  • Cognitive or memory impairment
  • Dizziness
  • Impaired coordination

[...] When you look deeper, you discover that FM is linked to pain states such as hyperalgesia (pain amplification) and allodynia (pain from a typically non-painful source). CFS/ME, meanwhile, is associated with muscle aches like what you get with the flu. Also, not everyone with CFS/ME has pain.

[...] research shows that people with CFS/ME have unique fatigue states. The same has not been found about FM, and not everyone with FM has fatigue.

The types of unrefreshing sleep are vastly different, as well. People with CFS/ME may sleep most of the time, yet never feel rested. So far, researchers have been unable to identify any actual sleep disorders in CFS/ME, but they have found abnormal sleep patterns. FM, on the other hand, is generally characterized by one or more recognized sleep disorders as well as abnormal sleep rhythms. In many, the sleep disorders pre-date FM. Generally, those with FM get very little sleep.

When it comes to exercise, which causes symptom flares or "crashes" in both conditions, studies link the reaction to different physiological processes, including low growth hormone in FM and abnormal heart rhythms and lactic acid processing in CFS/ME.

The presence of central sensitization puts these conditions in the same overall category, but it's not unique to these illnesses.

Differences Between FM & CFS/ME

One key difference, when it comes to a diagnosis, is which symptom is worst, pain or fatigue. The diagnosis could also be influenced by whether your doctor is more familiar with the American College of Rheumatology's criteria for FM or the CDC's guidelines for CFS/ME.

However, experts have found some significant differences.

  • Greater immune dysfunction in CFS/ME
  • Abnormal nerve response in FM
  • Stress-system (HPA axis) abnormalities predominantly from the adrenal glands in CFS/ME and the hypothalamus in FM
  • FM patients have abnormal levels of a cellular chemical called substance P (which transmits pain signals), this level appears to be normal in CFS/ME patients.
  • CFS/ME patients often have high levels of a cellular antiviral enzyme called RNase L, while the level is normal in FM patients.
  • CFS/ME diagnostic criteria include low-grade fever and sore throat, FM criteria do not.
  • The onset of FM frequently is traced to a physical or emotional trauma. The pain of FM usually gets better with heat and massage, while CFS/ME pain doesn't.
  • Elevated pro-inflammatory cytokines in CFS/ME, and sometimes elevated anti-inflammatory cytokines in FM.
  • FM has generally not been connected with viral and bacterial infections (with a few exceptions, such as mycoplasma and parvovirus B19)
  • CFS/ME has occurred in epidemics, but none have been reported for FM
  • FM is not thought to ever be progressive or life-threatening (as CFS/ME can be in rare cases)
  • FM does not usually cause severe immune dysfunction, neurological symptoms and exercise intolerance
  • CFS/ME usually does not cause allodynia (exaggerated response to pain: non-painful stimuli experienced as painful)
  • Diagnosis of FM requires tender points (painful areas in the muscle that occur in certain places)
  • CFS/ME tends to begin after flu-like symptoms and may be linked to a virus
  • CFS/ME patients often have high levels of a cellular antiviral enzyme called RNase L, while the level is normal in FM patients
  • CFS/ME diagnostic criteria include low-grade fever and sore throat, while FM criteria do not
  • People with FM have tender points and abnormal levels of a cellular chemical called substance P (which transmits pain signals), and this level appears to be normal in those with CFS/ME
  • Meanwhile, the onset of FM frequently is traced to a physical or emotional trauma. The pain of FM gets better with heat and massage, while the pain of CFS/ME does not."

I am interested to read at the beginning of the page that many doctors lump FM and M.E. together, believing they stem from the same cause. Every time I talked to anyone about the difference between FM and M.E. I was hearing that the two conditions have the same symptoms, and onset even seems to be similar; as such I had also come to the conclusion that they were one and the same.

I think, but cannot tell for certain, that this website may be American. The reason I say this is that my experience has been that when I suggest to doctors and other medical professionals that FM and M.E. are the same condition they react very negatively. Since being diagnosed with FM, medical professionals have taken me more seriously than they previously did; they tend to dismiss my diagnosis of M.E., but pay attention to FM. My understanding is that in the US, they are given about equal attention, though unfortunately both being dismissed by many medical professionals. I believe medical opinion of M.E. in the UK is far more negative than that of FM, because of the affect Dr Wessely has had, whereas the profession in the US has not had that influence. Wessely has not given the same attention to FM that he has to M.E., which may be why FM is taken more seriously. And may be why doctors look at me derisively when I ask if the two conditions are one and the same.

As the article suggests, I honestly do get very confused when trying to describe the pain I experience. A friend of mine recently asked me to describe FM pain to her because she is concerned she is developing it on top of her M.E.. I struggle with hypermobility pain, sciatica, other back pain, M.E. pain, and supposedly FM pain, and I honestly cannot tell you which is which a lot of the time.

I've experienced quite extreme pain for as long as I can remember. As a teenager I struggled with pain in my joints and throughout my legs, sometimes my arms too. The pain in my legs was sometimes so severe that I could not walk. I learnt many years later that the pain in my legs and arms was because of problems with my back. I learnt last year that the pain in my joints is due to being hypermobile. Both were dismissed by medical professionals as being growing pains. If you read further into the FM/CFS/ME Resources website you read of many patients with FM being told by medical professionals that they don't have any clinical signs of pain. This has lead me to wonder whether I actually had FM or M.E. many years before they hit me properly.

I had concluded months ago that the rheumatologist was incorrect to diagnose me with FM. The reason for this was that she seemed to do so upon hearing that I had pain in muscles. She seemed unaware of what tender points were and did not ask me about them. Plus she seemed to simply dismiss M.E. as irrelevant. I did not think that half an hours consultation was adequate for diagnosing something as severe, with such implications, as FM. Having read this document I now believe I am correct. I do not think I have FM. I cannot indicate tender points for the pain I have. I would describe it as being in my muscles, feeling like the bone is bruised. Sometimes it hits the exact same spots in my muscles; I can hit that spot, as if to give myself a dead leg / arm, and the pain will go temporarily. Other times the pain will simply radiate around the muscles. I had previously thought that TMJ (Temporomandibular Joint Syndrome) was only associated with FM. I have it, as such it was in my mind, my only connection to FM, but now having read that people with M.E. suffer it also, I shall dismiss that thought. Finally, the rheumatologist did not test for abnormal nerve response, did not test my cellular substance P levels, did not test for elevated anti-inflammatory cytokines, etc etc.

My conclusion is that I will be taking this document to my new GP and asking them to remove the diagnosis of FM from my records. While it has had be taken more seriously, had me receive medication that is helping me which I would not otherwise have received, and probably would have the DWP taking me more seriously, if it turns out that FM and M.E. are completely different conditions at some point in the future, I would rather that my medical records were accurate. I would also like to show the 'system' that I am not a hypochondriac collecting diagnoses.

Wednesday 1 August 2012

Call to Ed Milliband to support the sick and disabled

"Please support Sonia Poulton's call to Ed Milliband to support the sick and disabled.

Read her letter, and sign if you agree with her. She will deliver the letter to Ed Milliband personally."


It's a live document, which means people are signing it at the same time, so please be careful not to type in the middle of someone elses writing (like I did to start with).

The letter Sonia wishes you to read, and sign your support for is below:

"Dear Mr. Miliband,

I am a UK-based journalist and broadcaster. Here is a link to my website. http://www.soniapoulton.co.uk. On my site you will find all the media outlets that I contribute to across print, TV, radio and internet, nationally and internationally.

I am prompted to write to you having just watched these two programmes on the subject of ‘fit to work’ testing for sick and disabled people: Channel 4′s Dispatches (‘Britain On The Sick’) and BBC2′s Panorama (‘Disabled or Faking it’).

This year, as a writer, I have been made painfully aware of how distressing, unreliable and costly – both physically and emotionally – the Work Capability Assessment is for those undertaking it. The financial cost to the country is another concern altogether.

I am aware that Employment minister Chris Grayling has made much capital from blaming Labour for the introduction of this system, administered by ATOS. Equally, Mr. Grayling has made it clear that he views the Coalition’s implementation of the process as preferable, and less harsh, than that carried out under the Labour government.

WCA, clearly, is beset with problems. The ATOS assessor, captured undercover in C4′s programme, referred to it as ‘Toxic’. It was made clear that it was designed to reduce benefit recipients. Chris Grayling continues to deny there are targets. I am less inclined to believe him.

The test, at best, is unquestionably inadequate and not fit-for-purpose. Even the Government’s own adviser, before he resigned, described it as ‘patchy’. At worst, it is downright disadvantageous to those who are subject to it.

For many people the horror of the ATOS test has been the worst kept secret for years. Sadly, others have been less fortunate and are no longer here to register their misery. There currently exists a known demographic of people who have died after being found ‘fit to work’. Are you aware of this?

This year doctors at the British Medical Association have opposed WCA. Those who endure it have opposed it. Even the occasional newspaper and TV programme dares to oppose it. As a Social Commentator, I certainly have.

Why, then, has Labour – under your leadership – not opposed it? Should I assume that you support it? I am disturbed by what I view as a dangerous trend in our country. There is a clear demonisation of sick and disabled people, routinely labelled as ‘scroungers’ by the media, and driven by frequently skewed statistics issued by the DWP.

Meanwhile, the incidences of attacks on sick and disabled has risen. Disabled people are more in fear for their safety than at any other time in recent history. I believe that there is a direct correlation between the resentment whipped up about ‘spongers’ and the physical assaults taking place. Surely this is not acceptable to you. It certainly isn’t acceptable to me.

The names listed below this letter are from people who support the core message contained within it. Like me these are concerned citizens. Some are directly affected by issues of sickness and disability, others are not.

For my part, I am healthy, able-bodied and work full-time but I believe it is my duty to support those who need help. I believe that is a duty of us all. Including the Labour party.

Sickness and disability can happen at any time and to any one of us. I would like to think that others would also support me in my hour of need.

I believe what we need in this country is more compassion, not less. The WCA is unacceptable for a progressive country and it is a clear failure. The money spent on the appeals process confirms that, quite aside from the human misery it costs.

I have just heard that Tom Greatrex, MP, has secured a Westminster Hall debate on September 4 with regard ATOS and WCA. I ask you, Mr. Miliband, can we count on you to take a long overdue stance in support of our sick and disabled, too?

I do hope so. I look forward to your response.

Best wishes, Sonia Poulton"