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News and Opinions about MS, Health & Disability

Zika set to hit Europe but WHO plays down risk

The Aedes mosquito is the most common carrier of the Zika virus.

The Aedes mosquito is the most common carrier of the Zika virus.

Health officials are playing down the scares associated with the risk of a European outbreak of the infectious Zika virus – although they admit it is possible as the weather gets warmer.

Meanwhile, 279 pregnant women in the US and its territories have tested positive for infection with Zika. Of these, 157 are in the US and another 122 are in US territories, primarily Puerto Rico, according to the US Centers for Disease Control and Prevention (CDC).

Back in Europe, a statement from the World Health Organization (WHO) in Europe said on Wednesday, that the overall risk was ‘small to moderate’ throughout most of Europe but is highest in areas where Aedes mosquitoes thrive. These are the Portuguese island of Madeira and the north-eastern coast of the Black Sea.

“There is a risk of spread of Zika virus disease in the European Region and … this risk varies from country to country, said Zsuzsanna Jakab, the WHO’s regional director for Europe.

“We call particularly on countries at higher risk to strengthen their national capacities and prioritize the activities that will prevent a large Zika outbreak.”

The WHO’s European region covers 53 countries and a population of nearly 900 million. It stretches from the Arctic Ocean in the north to the Mediterranean Sea in the south and from the Atlantic in the west to the Pacific in the east.

An outbreak of Zika that began in Brazil has caused concern across the world. It has been linked to thousands of cases of the birth defect microcephaly where mothers became infected with Zika while pregnant.

The WHO has said there is strong scientific consensus that Zika can also cause Guillain-Barre Syndrome (GBS), a rare neurological condition that causes temporary paralysis in adults. GBS has also been linked to other neurological diseases, such as multiple sclerosis.

The WHO’s Geneva headquarters in February declared the Zika outbreak a public health emergency of international concern (PHEIC), warning it was spreading “explosively” in the Americas.

The WHO’s European office said that if no measures are taken to mitigate the threat, the presence of the Aedes aegypti mosquitoes that can carry the virus mean the likelihood of local Zika transmission is moderate in 18 countries in the region.

A further 36 European countries have low, very low or no likelihood, the assessment found. Aedes mosquitoes are not found in those countries and their climates would not be suitable for the mosquitoes to establish themselves.

Paul Hunter, a professor of health protection at Britain’s University of East Anglia, described the WHO’s Zika risk warning as ‘timely and real’ but added that any outbreak would probably be relatively short-lived.

“The risk is mostly in southern Europe and especially around the Mediterranean coast,” he said. “However, even if Zika did start to spread in Europe, it is unlikely to become established as an outbreak is very unlikely to continue over winter.”

The WHO’s European risk analysis took in multiple factors, among them the presence of Zika-transmitting mosquitoes, suitable climates for the mosquito, previous history of transmission of dengue fever or chikungunya virus, ship and flight connections, and population density and urbanization.

It also considered the capacity of the country to contain transmission at an early stage, based on four main factors: vector control, clinical surveillance, laboratory capacity and emergency risk communications.

 

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Queen’s Speech: Shadow minister and newspaper question ‘missing’ White Paper that Crabb dumped

HM The Queen reads the government-prepared speech at the opening of parliament. She is accompanied by HRH Prince Philip, the Duke of Edinburgh.

HM The Queen reads the government-prepared speech at the opening of parliament. She is accompanied by HRH Prince Philip, the Duke of Edinburgh.

Immediately after the Queen’s Speech, Labour’s shadow minister for the disabled and a national newspaper both queried a supposedly missing White Paper from the government’s plans – but both ignored the fact that work and pensions secretary Stephen Crabb had already stated that he had dumped it in favour of a later Green (discussion) Paper. That’s why it wasn’t in the speech.

Now, we all know as the Queen’s Speech is, of course, nothing of the sort in reality. Yes, Her Majesty makes it from the House of Lords, sitting on the throne and wearing the Imperial State Crown. But that’s as close it ever gets to being the ’Queen’s Speech’.

It is delivered by the Queen at the UK’s State Opening of Parliament when she announces what ‘Her Government’ is going to do in the next session of parliament. That speech, showcasing planned legislation, has been prepared by the government. The Queen’s role is ceremonial; she just has to read it.

Keen watchers of the Queen’s Speech often take as much interest in what is not included as well as what is announced.

For example, the government had previously promised a White Paper on improving employment prospects for the disabled, but on the day the Office for National Statistics (ONS) announced the ‘disability employment gap’ had actually widened, the Queen’s Speech failed to mention the disabled at all.

Labour’s Shadow Minister for the Disabled Debbie Abrahams was quick to take to Twitter to tweet: “Driverless cars, drones and spaceport to feature in Queen’s Speech. Where’s promised disability/employment White Paper?”

The Independent newspaper said thanks were due to ‘Cost of Cameron’ on Twitter for providing the evidence to support Ms Abrahams’ comment – a speech by Tory disabilities minister Justin Tomlinson on March 14 this year. He stated that the government was committed to halving the disability employment gap.

He said: “In the spending review, we announced a real terms spending increase on supporting disabled people into work. In the last year, 152,000 more disabled people entered employment. Our forthcoming White Paper will set out our plans to support more disabled people into work.”

However new figures from the ONS show that while the number of disabled people in work is up 121,000 since last year, it is actually non-disabled people who are the main beneficiaries of employment growth and moving into work faster than the disabled counterparts.

The ONS figures shown that the employment rate for people who are not disabled increased by 0.9%bcompared to 2015, while disabled people’s employment only increased by 0.6%. Therefore, instead of closing, the gap is growing.

The absence of the White Paper, however, will come as no surprise to regular readers of this blog, who will recall the comments by Stephen Crabb to the House of Commons’ Select Committee for Work and Pensions. He told the committee that instead of a White Paper, he hoped to bring forward a Green Paper later in the year.

A Green Paper is a tentative government report and consultation document of policy proposals for debate and discussion, without any commitment to action.

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Danger of ‘silent’ heart attacks is lack of recognition

Ultrasound scan, file picture.

Ultrasound scan, file picture.

There is no doubt that heart disease is a killer. In fact, according to the World Health Organization, it is the biggest killer – and is responsible for nearly half the deaths (48.6%) of all the 10 leading causes.

Some years ago I had a heart attack although there were no obvious signs at the time. It was diagnosed later as a silent attack – the type that people suffer and do not realise they have had.

This week I learned that, as a result of new research, experts now say that 45% of people who have heart attacks suffered the ‘silent’ variety, where patients believe they have strained a muscle or have indigestion. Sometimes these may be associated with unexplained fatigue and discomfort in the jaw, upper back or arms.

Silent heart attacks can cause just as much damage as heart attacks which are instantly recognised. But as silent attacks do not come with the usual symptoms of chest or arm pain, patients do not recognise the danger and tend not to seek treatment which can help prevent another.

The research, published in the American Heart Association journal Circulation, looked at the records of 9,500 middle-aged men and women between 1987 and 2013. Nine years into the study 7.4% of the volunteers had had heart attacks; 317 were silent, while 386 noticed symptoms immediately.

Lead researcher, Dr Elsayed Soliman of the Wake Forest Baptist Medical centre, North Carolina, found the silent attacks are more common in men, but are more dangerous for women who are more likely to die from this type of attack.

Patients who have suffered a silent heart attack should be treated as if they had suffered the usual symptoms, according to Dr Soliman.

As a silent heart attack happens without the usual symptoms, such as chest pain and overwhelming anxiety, shortness of breath may be the only warning sign. But even that is not a great indicator when, like me, you already have multiple sclerosis which includes bouts of fatigue and breathlessness.

However, in 2010 even greater fatigue than usual and more frequent shortness of breath did convince me to see my GP. He diagnosed atrial fibrillation (irregular heartbeat) and referred me to a cardiologist.

There, two ultrasound scans quickly followed. At first, they thought there was a clot in the heart but doubts about that were raised by the second ultrasound – so an MRI was requested. This showed conclusively that the supposed clot was, in fact, a scar from a previous silent heart attack.

The usual ‘go to’ steps for anyone with a heart condition didn’t really apply in my case: having never smoked, being on the heavier side of ‘acceptable’ and cholesterol and blood pressure both testing as normal. Taking more exercise, however, was severely hampered by mobility problems caused by MS.

Today, even though my heart attack was silent and unknown by me, heart-related medications outnumber those taken for anything else.

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Secret reports, that ministers said did not exist, say they WERE warned that vulnerable being hit hardest

 

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Iain Duncan Smith, former Work and Pensions Secretary, headed team of ministers who did nothing to protect vulnerable, says report.

Writer’s Declaration of interest: I have multiple sclerosis and receive both ESA (in the support group) and Disabled Living Allowance (both care and mobility components at the highest rates).

‘No matter what they tell you, No matter what they do, No matter what they teach us, What we believe is true’1

How true those words have become with the long-awaited reports of secret internal inquiries into deaths of people claiming disability benefits being finally released on Friday.

The very existence of the reports was for a long time denied by UK Department for Work and Pensions (DWP) ministers – headed by then secretary of state Iain Duncan Smith.

Although heavily redacted2, or censored, the reports do still show that government ministers stood by and did nothing despite being warned that the Work Capability Assessment back-to-work tests were hitting vulnerable disabled people the hardest.

This has got to be the 21st century’s most tragic equivalent of the biblical story of Pontius Pilate’s hand washing. But this time, the ‘it is not my fault’ argument just won’t wash.

However, unbelievably, the DWP is continuing to deny responsibility. A spokesman said: “Any suicide is a tragedy and the reasons for them are complex, however it would be inaccurate and misleading to link it solely to a person’s benefit claim.”

There were 49 inquiries up to August 2014. They were mostly undertaken after claimant suicides and though, after numerous redactions, they fail to make a direct link between benefit cuts and claimant deaths, they do highlight widespread flaws that lead to vulnerable claimants experiencing trauma.

Ministers initially denied that they held any records on people whose deaths may have been linked to benefits system. This was untrue, they were just being hidden as the release of the reports, in response to Freedom of Information (FOI) demands, clearly shows.

Apparently, another nine cases have been investigated since August 2014 and are already subject to further FOI requests.

 

1No matter what (recorded by Boyzone) Songwriters LLOYD WEBBER, ANDREW / STEINMAN, JIM Published by Lyrics © Universal Music Publishing Group

2Officials have removed from the reports any references to the specific events that triggered an investigation, as well as dates, names of claimants or staff and locations. Several of the inquiry reports have been stripped of almost all data.     In two instances, investigators reported that it was difficult to carry out a proper inquiry because DWP records had been purged, or not kept properly.

 

 

Suicides of benefit claimants reveal DWP flaws, says inquiry – The Guardian newspaper

Secret papers show that DWP knew that benefit cuts would hit vulnerable hardest – Third Force News

 

 

 

 

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Ellie is one of many assistance dogs who make life so much easier for their partners with serious disabilities

Factfile: Canine Partners

  • Dogs are carefully matched to the applicants’ needs and lifestyle, no matter how challenging, learning tasks and commands that will be of most use in that partnership
  • Dogs help with everyday tasks such as opening and shutting doors, unloading the washing machine, picking up dropped items, pressing buttons and switches and getting help in an emergency
  • A canine partner often reduces the need for a carer, thus giving greater independence and confidence to the person with a disability
  • Average age of applicants is 44
  • Most common disability of Canine Partners’ clients is multiple sclerosis

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Ellie at work, retrieving a card from the cash machine.

Ellie at work, retrieving a card from the cash machine.

As we go out and about during our daily lives, the most usual assistance dog we are likely to see will be a Guide Dog faithfully leading a blind person along crowded pavements, around shops and across busy roads. But there are other dogs that provide different kinds of help for people with various needs.

Five-year-old Ellie, a Labrador, is one such dog. She is a canine partner who has helped Debbie Schwartz live with mitochondrial disease since they were brought together in May 2013. Now, two years on and the pair would not be separated.

Debbie has a progressive, degenerative neurological disorder which meant that, by the age of 25, she found that she was unemployable

She explained: “My confidence was at an all-time low, as everyday tasks were making me feel frustrated and stupid – things that I had been able to do before without thinking, I could no longer do. I felt like I had lost all control over my life; it all seemed pointless and was too much effort.”

This all changed when Debbie saw a documentary on television featuring Canine Partners.

“I watched in awe at what the dogs were able to do, and considered the possibilities open to me if I was to have such a dog.  I waited over a year to apply, with all different doubts and concerns stopping me from sending in the form.” These included ‘am I disabled enough?’, ‘there are people more worthy’, ‘would I be able to take care of a dog?’

“Despite the fact it took so long to send off the form, the simple act of completing it changed my mindset – I had chosen to live, and to move forward, knowing that to do so I’d have to adapt and Canine Partners was to be my master plan, helping me through this process,” she said.

It took more than a year for Debbie to be matched with Ellie.

Debbie Schwarz with Ellie, her Canine Partner.

Debbie Schwarz with Ellie, her Canine Partner.

She recalled: “I was so anxious meeting her for the first time, but the worry was for nothing. Ellie walked straight up to me and placed her head in my lap. It was love at first sight!  Who could resist her ginger eyelashes?

“She is my perfect match, my perfect partner.  She is the calming influence in my life, being so relaxed and often working to her own time, meaning I have to slow down.  This allows me to take my time and do things more safely. That’s not to say she is always calm; she has a mischievous side and an infectious sense of fun.  She loves to please and, as such, performs her tasks with such a zest and enthusiasm that you can’t help but smile.  Being so intelligent she understands when there is an urgency and acts accordingly, often doing tasks during these times that she hasn’t specifically been trained to do. I find her more remarkable every day.”

Ellie does many tasks on a daily basis that have allowed Debbie to reduce the amount of care she requires.

“She fetches the mail, the phone and anything that I drop and brings it to me; she can open and close doors; turn on and off light switches; help me by undressing me or bringing me a towel; and pulling me into a sitting position from a lying position. She can even help with the washing by putting the clothes in the machine, then taking them out and giving them to me. If I have fallen or am unwell in the home, she can pull the emergency chord, or open the door and go to get help.

“When shopping Ellie can take an item off the shelf in a shop and give it to me, she can also hand a purse to the cashier. Outside at the ATM she can take out my card, money and receipt. She is so clever!

“She does many more subtle tasks that allow me to go about my day with minimal assistance, including flushing the toilet and putting her food bowl in the sink. However, the most special thing that she offers me is her companionship and complete trust.”

Debbie said that Ellie has given her a sense of independence, dignity and happiness in place of the feelings of isolation and loneliness which overwhelmed her before.

She said: “Ellie enables me to be me. She is a great leveller, which has allowed me to feel accepted and to be a participant once more. I no longer sit and wait, I get out there and interact; something I never had the confidence to do before this wonderful girl came into my life.”

Speaking of the Canine Partners charity, Debbie added: “I must thank everyone involved in Elle’s upbringing and training; to all of her puppy parents, foster parents and her advanced trainer.  Without dedicated people like these, Canine Partners would not be possible and I would not have been given this amazing opportunity.  Their sacrifice and hard work has given me both a life and a best friend – and for this there are no words I can say to express my gratitude.”

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About Canine Partners

  • Founded in the UK in 1990. (Many other countries have similar programmes)
  • Aims to train dogs to meet the needs of people with the most complex disabilities including members of HM Armed Forces
  • Is a member of COBSEO, the Confederation of Service Charities, Veterans Scotland and Assistance Dogs International
  • Is a member of Assistance Dogs UK (ADUK) the overarching organisation that checks on standards, for training, behaviour and welfare of the dogs, and the partnerships
  • Specifies the sponsorship cost of a canine partner from selection as an eight-week-old puppy to the end of its working life at 12 years of age = £20,000. That’s £4.56 a day
  • Receives no government funding and relies solely on public donations and gifts in Wills
  • Has two training centres – one in Heyshott near Midhurst, West Sussex; and one in Osgathorpe, near Ashby-de-la-Zouch in Leicestershire
  • Receives around 1,000 requests for application packs each year
  • Retains ‘ownership’ of the dogs to ensure welfare and peace of mind for the partners should the partners’ health decline; partners pay a nominal fee of £1 for custodianship of the dog once they are paired
  • Provides ongoing regular home visits and telephone support and advice from our network of aftercare assistants for the lifetime of each partnership

 

Canine Partners, UK

 

 

Assistance dogs in other countries

 

 

 

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Disability: There is no 20-metre rule, says minister

Baroness Altmann

Baroness Altmann

Most readers of my blog will know that I have a disability, namely multiple sclerosis, that causes significant mobility issues. This means that I need to use a wheelchair to move more than 15 metres; and that’s on a good day. As such I receive Disability Living Allowance (DLA).

For everyone who lives in the United States, or anywhere else outside the UK, I need to explain that everyone who receives the UK’s DLA mobility component at the highest rate has been able to use it to have a Motability car instead. This is their own choice of car from the list of vehicles available from the Motability organisation. The car is provided absolutely new and complete with insurance, servicing, tyres, windscreen – in fact, everything except fuel.

With DLA now being replaced by Personal Independence Payment (PIP), the same arrangements remain in place. Well, the same except that the requirements to qualify for the highest rate mobility payment have been changed. It is now more difficult to obtain the highest level.

According to the government’s own figures, this will lead to some than 428,000 people having to return their Motability cars as they are reassessed for PIP and not given the top rate of mobility component.

The key change to the eligibility to that mobility payment is that while the DLA assessment said that anyone who was unable to walk 50 metres was entitled to the highest rate, under PIP that distance is now reduced to just 20 metres.

Disability Rights UK (DRUK) and the Disability Benefits Consortium (DBC), among other organisations, have criticised the new 20 metre restriction as being arbitrary and unfair, saying the 50 metre assessment was a well-established and research-based measure of significant mobility impairment.

Confusion still reigns on this contentious point, however.

Despite contrary experiences of many DLA recipients when they have been reassessed for PIP, Baroness Altmann, minister of state for the department for work and pensions, speaking in the House of Lords on May 4, said: “I would like to clarify what appears to be a widespread misconception regarding the differences between the mobility assessment in PIP and the mobility assessment in DLA.

“Many noble Lords have spoken of a ‘20-metre rule’, but there is no such rule. Some people believe that we have changed the assessment of a distance a claimant is able to walk from 50 metres to 20 metres. This is not the case. The higher rate of DLA was always intended to be for claimants who were unable, or virtually unable, to walk. This is still the case in PIP, but we have gone further.

“Under PIP, if a claimant cannot walk up to 20 metres safely, reliably, repeatedly and in a timely manner, they are guaranteed to receive the enhanced rate of the mobility component. If a claimant cannot walk up to 50 metres safely, reliably, repeatedly and in a timely manner, then they are guaranteed to receive the enhanced rate of the mobility component.”

As a result of that debate, officials from the DWP are to meet with representatives of both DRUK and DBC, It will be interesting to see the results of those discussions.

 

 

 

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Suitable for those with disabilities? Maybe not

Shared facilities are not the answer.

Shared facilities are not the answer.

Restrooms or toilets provided for people with disabilities often fail to live up to the promises they appear to make. Probably, this is more to do with lack of planning and foresight but also may be influenced by available space. Too often, though, it might be due to finances.

It is bad enough for those who can manage to walk with some assistance but for wheelchair users the situation is more difficult and an extended wait may even be disastrous. I know that from personal experience as MS makes using a wheelchair a necessity and has given me a bladder problem.

There are a number of issues that, for me, make a facility supposedly put there for us, really unsuitable for a person with a disability who is using a wheelchair. And here, for the moment, I am talking about someone who can transfer himself or herself from the chair to the seat itself.

These issues are:

  • Where there is a need to share the same room with baby changing facilities;

I cannot remember how many times I have had to wait while mum or dad copes with two or three children, often without a baby at all;

  • Where a room for disabled people is located within a single-gender washroom;

Oh great, I am being pushed in a manual wheelchair by my wife. I cannot manouevre the chair myself and my wife cannot enter the ‘Gents’ to enable me to reach the facilities I need. Ridiculous design. The only answer? Ask a passing man to help me.

  • Where a room is not large enough to cope with a wheelchair;

Somehow, I get inside, just, and manage to fasten the door – but there is so little room that it is difficult to transfer from the wheelchair and back again.

  • Where the emergency pull cord has been tied up or shortened to be out of reach of children.

Yes, I know that they have had problems with children pulling the cord. Yes, I know that it seems like a good idea putting it beyond their reach. BUT, if someone falls on the floor and cannot get up, how is he or she going to summon assistance?

Accessibility does not just mean ramps and level entrances; it does not even just mean accessible parking spaces. It does include the provision of toilet facilities for the disabled and by ‘accessible’ I mean that they need to be: dedicated for such use, not multi-purpose; readily available for people of either gender, not placed inside a ‘Ladies’ or ‘Gents’; large enough to take a wheelchair and allow easy and comfortable transfer; provided with a proper method to call for help if someone has fallen.

Of course, besides the basics, there are needs for even more aids such as hoists, for those who cannot transfer themselves, as well as an adult-sized table or bench to enable a carer to change incontinence pads.

Oh, just one more thing, if you don’t have a disability, please don’t be tempted to use our special room. We need it; you are very fortunate not to do so.

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‘No further plans to cut benefits’ pledge lasts 51 days

Work and pensions secretary Stephen Crabb discloses his plans to the select committee.

Work and pensions secretary Stephen Crabb discloses his plans to the select committee.

Declaration of interest: I have multiple sclerosis and receive both ESA (in the support group) and Disabled Living Allowance (both care and mobility components at the highest rates).

 

Sneaky, very sneaky and possibly even underhanded, is the only way I can describe how the UK’s work and pensions secretary Stephen Crabb decided to reveal the government’s latest intentions to make further cuts to disability benefits.

Instead of making a statement in the House of Commons, he chose to disclose the proposals in an almost throwaway and casual style before the work and pensions committee select committee.

He told the committee that he wanted to go further than the controversial and much-criticised £12 billion welfare cuts set out in the 2015 Conservative manifesto and to ‘re-frame discussion’ around disability welfare reform.

And this, let me refresh your memory, from the same man who, after replacing Iain Duncan Smith as work and pensions secretary, announced the dumping of proposed changes to the Personal Independence Payment and said that the government had no plans to make further welfare cuts.

At the time, I warned that we should not be taken in by his ‘weasel words’.

This week Mr Crabb told the committee that he intended to set out a green paper later this year to propose further changes to disability benefits.

He explained that the measures that have either already been legislated for or announced add up to the planned £12 billion of welfare cuts but added: “Does that mean welfare reform comes to an end? I would say ‘no’. I’ve already pointed to what I see as one of the big challenges of welfare reform – and that’s around work and health.”

Mr Crabb told MPs on Work and Pensions Select Committee that he would deploy ‘smart strategies’ for cutting expenditure on disability and sickness benefits and would hopefully be able to secure the support of disability charities.

He said: “In terms of how you make progress of welfare reform there when you are talking about people who are very vulnerable, people with multiple barriers, challenges, sicknesses, disabilities – I am pretty clear in my mind that you can’t just set targets for cutting welfare expenditure,” he said.

“When you’re talking about those cohorts of people you’ve actually got to come up with some pretty smart strategies for doing it which carry the support and permission of those people and organisations who represent those people who we are talking about.

“This is why there’ll be further information in due course about this. I want to produce a green paper later this year which starts to re-frame discussion around this set of issues.”

Criticism to Crabb’s latest plans have been voiced by many including campaigning blogger Mike Sivier. Writing on Vox Political Online, he said: “He (Crabb) means he wants to cut funding to the vulnerable and make it more likely they will die, the same as Iain Duncan Smith always meant.

“This is a war of attrition; the Tories have already killed off a great many sick and disabled people and hidden the facts, in the opinion of this writer. That means there are fewer left to resist what may clearly be seen as a genocide.

“That’s why fighting these cuts is so vital. Stephen Crabb must not be allowed to think his murderous plan (whatever it is) will be easy to enact.”

Labour’s shadow work and pensions secretary Owen Smith has called on the government to dump the ESA cuts that have already been passed. He said: “The flimsy case for the cuts to Employment Support Allowance is now totally blown apart by this broken promise (that no further cuts were planned) and the Tories must listen to Labour’s calls for them to be reversed.”

 

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Raising awareness of fibromyalgia worldwide

Fibro tree

Yesterday, all around the world, was Fibromyalgia Awareness Day with a host of different events being staged in various countries to draw attention to the illness.

Fibromyalgia Syndrome (FMS) is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the fibrous tissues in the body.

It is similar to, and sometimes confused with, Chronic Fatigue Syndrome. In fact, the conditions may be related. Pain, fatigue and a host of other problems are seen in fibromyalgia. CFS displays similar symptoms. However, a practical way to differentiate the disorders is that pain is the predominant problem in people with fibromyalgia, whereas fatigue is the major complaint in people with CFS.

Most FMS patients say that they ache all over. Their muscles may feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn. More women than men are afflicted but it shows up in people of all ages.

Musculoskeletal pain and fatigue experienced by FMS patients is a chronic problem, which tends to have a waxing and waning intensity. There is currently no generally accepted cure for this condition.

There is often concern that FMS is the early phase of some more severe disease, such as multiple sclerosis or systemic lupus erythematosus. Long-term follow up of fibromyalgia patients has shown that it is very unusual for them to develop another rheumatic disease or neurological condition. However, it is quite common for patients with ‘well established rheumatic diseases, such as rheumatoid arthritis, systemic lupus and Sjogren’s syndrome to also have fibromyalgia.

It is important for their doctor to realize they have such a combination of problems, as specific therapy for rheumatoid arthritis and lupus does not have any effect on FMS symptoms. Patients with fibromyalgia syndrome do not become invalids, though they sometimes feel that they are, with the condition – nor is there any evidence that it affects the duration of their expected life span. Nevertheless, due to varying levels of pain and fatigue, there is an inevitable contraction of social, vocational activities which leads to a reduced quality of life.

As with many chronic diseases, the extent to which patients succumb to the various effects of pain and fatigue are dependent upon numerous factors, in particular their psycho-social support, financial status, childhood experiences, sense of humour and a determination to push on with their lives.

Patients can find themselves unable to work in their chosen professions and may have difficulty performing everyday tasks. As a consequence of muscle pain, many FMS patients severely limit their activities including exercise routines. This results in their becoming physically unfit – which eventually makes their fibromyalgia syndrome symptoms worse.

These symptoms include pain, fatigue, sleep disorder, Irritable Bowel Syndrome, chronic headaches, Temporo-mandibular Joint Dysfunction Syndrome1 and Multiple Chemical Sensitivity Syndrome2.

Other common symptoms can include painful menstrual periods (dysmenorrhea), chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, frequent changes in eye prescription, dizziness and impaired coordination.

 

1Sometimes referred to as TMJD, Temporo-mandibular Joint Dysfunction Syndrome1 causes tremendous face and head pain in one quarter of FMS patients. However, a 1997 report indicates that as many as 90% of fibromyalgia patients may have jaw and facial tenderness that could produce, at least intermittently, symptoms of TMJD. Most of the problems associated with this condition are thought to be related to the muscles and ligaments surrounding the joint and not necessarily the joint itself.

2Multiple Chemical Sensitivity Syndrome increases sensitivities to odours, noise, bright lights, medications and various foods. It is common in roughly 50% of FMS or CFS patients.

 

  • If you think you may have Chronic Fatigue Syndrome or Fibromyalgia Syndrome, click here.

 

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Striving to make MS care fair

Pic: MS Trust

Pic: MS Trust

An ambitious project has been launched by the UK’s MS Trust with the most welcome aim of making sure that everyone affected by multiple sclerosis can access the best possible care.

MS care is changing. As already featured in a previous blog (click here), a new consensus on treatment for people with relapsing remitting form of the illness recommends that people receive treatment with a disease modifying therapy (DMT) as soon as possible after diagnosis. It also recommends that treatment should be closely monitored, and, if there are still signs of disease activity, a switch to a different, more effective treatment should be considered.

This new approach to treatment is the latest step in 20 years of progress in treating people with relapsing remitting MS, which has seen new drugs become available and specialist MS services developed. However, the MS Trust believes that implementing the new approach is likely to be extremely challenging. It says:

 

From our work with MS specialist teams we know that MS nurses, neurologists, physiotherapists, occupational therapists and other health professionals do a brilliant job and are hugely valued by people with MS. However, we also know that many specialist nurses, for example, have to manage far larger caseloads than is ideal or sustainable.

The new recommendations for MS treatment are likely to put even more pressure on MS specialist services. Somehow already stretched services will have to find more time to administer and monitor drug treatment for more people.

The organisation also wants to ensure that everyone has fair and equal access to treatment. It is right to have concerns because the availability of treatments through different local health authorities has become known as the ‘postcode lottery’ – and then there are people with other types of MS:

We also know that around half of the people living with MS in the UK – around 50,000 people – have progressive forms of MS, and there are no DMTs currently licensed for progressive MS. If specialist services are increasingly focused on drug treatments, will these people miss out on vital care? We know that people with progressive forms of MS have complex needs and really benefit from access to multidisciplinary MS teams comprising physiotherapists, occupational therapists and others. How do we make sure that they can access these services when they need them?

These concerns about the future of MS care, and making sure that everyone affected by MS has equitable access to MS specialists, are the reasons behind our MS Forward View project.

It all looks to be thought-out and very well planned. It includes:

  • Working with MS specialists, NHS managers and commissioners, and people with MS, to find ways to make the best use of resources and skills to make sure specialist services work for everyone.
  • Looking at how MS services currently work, what mix of professionals works best at delivering care for people with MS, and how it might measure what equitable care looks like in practice.
  • At the end of the project, producing an action plan for improving access to MS care which it hopes will be adopted by services across the UK, and result in a better deal for everyone affected by MS.

 

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