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The UKFibromyalgia Forums • View topic - Debate on Fibromyalgia in Parliament



Debate on Fibromyalgia in Parliament

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Debate on Fibromyalgia in Parliament

Postby TheHud » Fri Jun 26, 2015 12:00 pm

For info.

There is a debate in Parliament about Fibromyalgia and its effects on Wednesday 1st July starting at 11am for a limited time.

Hopefully this will make news. It should be on the BBC parliament programme.
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Re: Debate on Fibromyalgia in Parliament

Postby KenRP » Fri Jun 26, 2015 12:18 pm

Thanks for that, it seems like it's actually being taken seriously.
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Re: Debate on Fibromyalgia in Parliament

Postby lizashfield » Fri Jun 26, 2015 12:21 pm

Let us hope this will achieve something. Even if it just gets more people to recognise that this syndrome is real, it will help.
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Re: Debate on Fibromyalgia in Parliament

Postby carolad » Fri Jun 26, 2015 12:36 pm

I'm never convinced that just 'raising awareness' of a condition really makes any difference. The fact is that no-one knows what it is like to have a health condition unless they have it themselves. And even then, there are often 'degrees' of severity so not everyone with the same condition will be affected in the same way. That applies to every health condition, not just fibromyalgia.

You can end up wasting a lot of precious energy trying to get other people to understand what you are experiencing, but if they still don't 'get it', that only leads to frustration on your part. So I actually don't care if other people 'understand' my health issues or not....all I'm concerned with is how I can learn to deal with it :-)
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Re: Debate on Fibromyalgia in Parliament

Postby TheHud » Fri Jun 26, 2015 1:54 pm

Too true Carolad, however, there are many health professionals, employers and the flippin DWP lot that need some serious top down acceptance that this is actually a disease :(
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Re: Debate on Fibromyalgia in Parliament

Postby jess » Fri Jun 26, 2015 10:56 pm

On 1st July at 11am is Recorded Political Highlights ?
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Re: Debate on Fibromyalgia in Parliament

Postby Lindenp » Sat Jun 27, 2015 11:29 am

Hi TheHud, thanks for bringing this to our attention. :welldone: I will definitely record it and watch it and as you say let's hope it gets some news coverage. I personally think that anything that brings this condition to the public notice can only be of benefit. :chicken-dance:

It's so true that the DWP need to know that it is a "VERY REAL" condition and it is the government who stipulates how the DWP functions and that sets the criteria for PIP etc. The 'Assessment' part of PIP seriously needs to have some understanding and acknowledgement of Fibro and then maybe they won't be so quick to judge us and label us as 'fit for work' when we're not, and 'able to walk unaided' when we very clearly can't!!!

Thanks again for giving us the heads up on this one TheHud :welldone:

Gentle Hugs everyone :hugs: :hugs:
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Re: Debate on Fibromyalgia in Parliament

Postby Shayne2you » Sun Jun 28, 2015 9:35 am

About time. Too many people are chronically suffering on a day to day basis with this illness and yet no one believes you.. Its out of order. :-?
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Re: Debate on Fibromyalgia in Parliament

Postby TheHud » Wed Jul 01, 2015 7:10 am

http://www.parliamentlive.tv/Event/Inde ... 71e30f022d

Looks like not many could give a sh.t He is doing well but there is not many to interupt.
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Re: Debate on Fibromyalgia in Parliament

Postby crystalkaz » Thu Jul 02, 2015 12:40 pm

Did anyone manage to watch the debate or record the session in Parliment.
If so did they actually keep to their agenda and discuss Fibromyalgia.
Any update much appreciated. Thankyouxx
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Re: Debate on Fibromyalgia in Parliament

Postby TheHud » Thu Jul 02, 2015 1:31 pm

A full 27 minutes and hardly anyone there. the interesting bits are the heath dept reply, study it closely ;)

http://parliamentlive.tv/event/index/a8 ... %3A45%3A00
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Re: Debate on Fibromyalgia in Parliament

Postby Zia2014 » Thu Jul 02, 2015 2:07 pm

This is the interim transcript (sorry it's so long!):

Fibromyalgia
11 am

Alok Sharma (Reading West) (Con):

I beg to move,
That this House has considered treatment of fibromyalgia.
It is a pleasure to serve under your chairmanship for the first time in this Parliament, Mr Crausby. I welcome my hon. Friend the Minister to his place. He did brilliant work in his two Departments in the last Parliament, and I am sure that he will continue to excel during this Parliament.

I want to use this debate to throw a spotlight on a not particularly well known or medically well researched, but incredibly debilitating condition: fibromyalgia. I shall set out the views of some of those suffering from the condition, highlight the treatment currently available to help sufferers and, ultimately, make a few suggestions as to what can practically be done to improve life quality for those debilitated by fibromyalgia.

The last debate that I held in Westminster Hall was on sentencing for dangerous driving. That attracted a significant level of interest from and participation by fellow Members from across the House. As you can see, Mr Crausby, today’s debate has attracted a more modest level of interest. That is not because fibromyalgia is not a serious medical condition, but simply because it is not particularly well known, not least within some parts of the medical community.

Nick Thomas-Symonds (Torfaen) (Lab):

Does the hon. Gentleman agree that a critical issue is awareness—both public awareness and the awareness of sufferers themselves of what help is available? To give just one example, local support groups can be tremendously helpful. This is a two-track issue: it is about public awareness and the awareness of sufferers themselves.

Alok Sharma:

Yes, of course; the hon. Gentleman is absolutely right. I shall go on to provide more details of what is going on locally and perhaps what we ought to be doing nationally.

I first learnt about the condition almost by accident a few years ago, through a chance conversation with some constituents. Since then, through the work of the excellent Reading fibromyalgia support group, which meets regularly in my constituency, I have been able to learn more about fibromyalgia and meet many of the people locally who are trying to cope with the condition, as well as medical practitioners who are focused on helping sufferers.

Jim Shannon (Strangford) (DUP):

I thank the hon. Gentleman for bringing this issue to Westminster Hall for consideration. In my constituency, many people have come to me with disability living allowance claims, which is where my interest in and knowledge of fibromyalgia comes from. What concerns me greatly as a result of the correspondence and communication that I have had with my constituents is that GPs seem not always to be aware of the symptoms of fibromyalgia. That means that the figure for diagnosis in Northern Ireland is only 3%, yet we have a significantly larger number of people who have the disease. Does the hon. Gentleman think we need greater awareness among GPs to start with and then we can address the issue?

Alok Sharma:

Yes, of course; the hon. Gentleman is absolutely right. A common theme is emerging among colleagues participating in the debate.
Let me describe fibromyalgia. It is a long-term condition that causes pain all over the body. As well as widespread pain, people with fibromyalgia may have increased sensitivity to pain, fatigue, muscle stiffness, difficulty sleeping, problems with mental processes, headaches and problems with their bowel and stomach.

Mr David Jones (Clwyd West) (Con):

I congratulate my hon. Friend on securing this debate. He mentions the severe pain that sufferers endure. My constituent, Mrs Joanne Kirkby, suffers from this terrible condition. Is he aware that most of the pain relief treatment centres in mainland Great Britain are within England and that if a patient comes from Wales, it is necessary to go through an extremely lengthy and complicated bureaucratic process to access treatment at, for example, the Bath pain relief centre?

Alok Sharma:

My right hon. Friend makes a very good point. Perhaps the Minister, in his response, will comment on where treatment is available and where pain clinics are situated.

The exact cause of fibromyalgia is unknown, but it is thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system processes pain messages carried around the body. It is also suggested that some people are more likely to develop fibromyalgia because of genes inherited from their parents. In many cases, the condition appears to be triggered by a physically or emotionally stressful event, such as an injury or infection, giving birth, having an operation, the breakdown of a relationship or the death of a loved one. The key point is that anyone can develop fibromyalgia, although it affects about seven times more women than men.

The condition typically develops between the ages of 30 and 50, but can occur in people of any age, including children and the elderly. Exactly how many people are affected by fibromyalgia is not clear, although research has suggested that it could be a relatively common condition. Some estimates suggest that nearly one in 20 people in the UK may be affected by the condition to some degree. Of course, one of the main reasons why it is not clear precisely how many people are affected is that fibromyalgia can be difficult to diagnose. There is no specific test for the condition, and the symptoms can be similar to those of a number of other ailments.
Living with fibromyalgia can be incredibly debilitating. Ahead of today’s debate, a number of local people emailed me about their experiences of coping with fibromyalgia. I want to read out some extracts from the heartfelt and moving words that they sent me.

A father of young children writes:

“I have had Fibromyalgia for a couple of years now. My life and that of immediate family has changed significantly in adapting to and attempting to cope with my condition.

I am unable to continue working as a qualified accountant, as my ability to read, write and concentrate have all been significantly affected. I suffer with ‘Fibro-fog’, a difficulty in recalling words or train of thought where the mind goes blank...I find it impossible to switch off from the pain, as it is constantly moving as though it is being scattered around my body.

I, and many of the members of the Reading Fibromyalgia group, experience the lack of understanding of others due to the ignorance relating to this condition that we suffer. As we appear whole there is often a lack of compassion from others and we can be made to feel as though we are malingerers. I have always had a strong work ethic and believe in setting a good example to my children; if I could work then I would work.

My hope now is that there will be a greater understanding of Fibromyalgia and how limiting this condition can be on the individual.”

A female sufferer writes:

“My typical day starts with trying to get my body working. My joints are so stiff with pain that I have to sit on the side of the bed and massage my shoulders, lower back, my knees, elbows and hands. It takes an hour to get showered and dressed. I do feel a failure if I have to get my husband to come and help me.

After having problems with pain, exhaustion and fatigue for several years, they then turned into depression, stress and anxiety. My G.P. finally diagnosed me with Fibromyalgia.

In 2013 I went along to our local Fibromyalgia Support Group…I went in the room and saw that there was ‘nothing different’ with these people. I was reduced to tears to find that they were all like me, young and old, male or female, and that I was ‘Not a Fraud’.”

Another submission that I received was from a male sufferer. He writes:

“Living with Fibro is often difficult and it’s like we have a volume control button that is broken at maximum setting—sometimes the pain and stiffness abate with medication, exercise where we are able to do so and so forth but it always comes back later in the day or within a day or two of doing too much activity.

Depression in people with Fibro is common because of the life we used to live but many no longer can. This adds to the stress and tension and it can become a vicious circle. Exhaustion is common as well.

The lack of understanding and sympathy from other people including importantly the medical profession makes it all the harder to bear.
Yet Fibromyalgia has been recognised by the World Health Organisation since the 1970s as a chronic and long-term health condition. Thousands if not millions of people worldwide have Fibro either diagnosed or not so but they display the symptoms.

Yet people still think we’re making it up, which is very disheartening to us; some even are abusive to us because they don’t understand.”

Ahead of this debate, I spoke to many fibromyalgia sufferers, and colleagues who have contributed have clearly done the same. They will have heard the same things as I heard from constituents and in emails from people across the country, detailing their own experiences of coping with this debilitating condition. Three common themes emerge. First, fibromyalgia is not well enough understood by GPs and the medical profession, as the hon. Member for Strangford (Jim Shannon) said, and there seems to be no significant research effort to find a cure. Secondly, as a result, there is no consistency of approach or care across the country in helping sufferers to deal with the effects of fibromyalgia—exactly the point that my right hon. Friend the Member for Clwyd West (Mr Jones). Thirdly, the condition is not well enough understood by the general public or employers, and sufferers have told me that they have faced discrimination in the workplace as well as the wider community. That is completely unacceptable.

At this point, I want to mention the good work of the Fibromyalgia Association UK, which today merges with FibroAction to speak up with a louder voice for sufferers of fibromyalgia, provide national helplines and raise awareness of the condition with GPs. Although knowledge is inconsistent within the GP and health community, there are pockets of excellence. Last October I was invited to the one-year anniversary celebrations of the re-launched Reading fibromyalgia support group. There I met with Dr Antoni Chan, a consultant rheumatologist and physician at the Royal Berkshire hospital, who gave a presentation on the ongoing research aimed at understanding the condition and developing treatments. I also met Dr Deepak Ravindran, a consultant pain specialist at the Berkshire pain clinic. The clinic offers a comprehensive service, starting with expert diagnosis and followed up by medical treatment, which is complemented by good support from specialists in physiotherapy and psychology—a truly multi-disciplinary approach. I pay tribute to Dr Chan and Dr Ravindran for the excellent work they are doing to help fibromyalgia sufferers in Berkshire.

As a result of that meeting, I wrote to north-west Reading clinical commissioning group last November, providing a copy of the pamphlet on fibromyalgia that Dr Ravindran has produced and asking the CCG to promote understanding of the condition among the local general practitioner community. Dr Ravindran recently informed me that the need for an integrated and collaborative approach to managing fibromyalgia has been recognised locally, and a community pain service in the Reading area will start in September. That will be a collaboration between the Royal Berkshire hospital and the Berkshire healthcare NHS foundation trust, and its vision is to provide fibromyalgia-specific pain management programmes. That is good news for fibromyalgia sufferers in Reading and Berkshire, but, as other colleagues and I have remarked, the approach is inconsistent across the country.

I have three asks for the Minister and the NHS. First, education and knowledge of fibromyalgia must be improved among GPs and other healthcare professionals, and awareness of new diagnostic criteria must be increased and disseminated more widely. Secondly, strategies that provide an integrated and holistic service with patient empowerment as key must be promoted and developed, because patients need to be involved in decision making and the management of their condition. Thirdly, the aim should be to set up a network of fibromyalgia clinics across the country, so that patients who have had a flare-up of the condition have somewhere to go for treatment other than A&E or hospital.

My final point is about raising awareness of the condition more generally. Jeanne Hambleton, a freelance journalist and health writer, has informed me that last year she wrote to two well-known TV soap operas and asked whether one of the characters could be diagnosed with fibromyalgia to raise viewers’ awareness of the condition. Sadly, she did not hear back from the producers of either programme. I have no doubt that many people watch debates on Parliament TV, but it is safe to venture that many, many more watch soap operas. If the producers of “Casualty” or “Holby City” are watching the debate, they may want to get back to Ms Hambleton about her suggestion. I look forward to the Minister’s response.

11.14 am

The Parliamentary Under-Secretary of State for Life Sciences (George Freeman):

I congratulate my hon. Friend the Member for Reading West (Alok Sharma) on securing a debate on this important issue. In his constituency, he has shown great support for his local fibromyalgia patient group by advocating on its behalf, raising money and raising the profile of the disease, which is so debilitating for its sufferers. He has helped the group to continue its important work of improving awareness of the condition and providing advice to patients and their families. I pay tribute to the work of FMA UK, other fibromyalgia charities and the many patient support groups around the country who work tirelessly to raise the profile of the disease and support those who are affected by it. I welcome today’s merger of FMA UK and FibroAction, which will help to give a stronger patient voice to those who are affected.

Fibromyalgia is an incurable musculoskeletal condition of unknown cause that can have a debilitating impact on those who are affected. Although no exact figures are available, research suggests that fibromyalgia affects around 2.5 million patients in the UK, the majority of whom are women over the age of 40. Fibromyalgia symptoms affect the soft tissues, muscles, tendons and ligaments of the body and result in widespread and variable pain throughout the body. Poor-quality, non-refreshing sleep contributes to an ongoing cycle of chronic pain and fatigue, and, in some cases, poor concentration and short-term memory problems. Irritable bowel syndrome, restless legs, head and neck pain and sensitivity to temperature change are also associated symptoms of fibromyalgia. The symptoms and their severity differ from patient to patient.

Diagnosing the symptoms of fibromyalgia can be challenging for GPs. Some 20% of the general population consult their GP about a musculoskeletal problem each year, which amounts to more than 100,000 consultations a day. The symptoms of fibromyalgia are common to other conditions such as rheumatoid arthritis, lupus and chronic fatigue syndrome. In addition, patients with fibromyalgia can often visibly appear well, despite their symptoms. GPs face a further obstacle because there is no diagnostic test that accurately identifies the condition. A diagnosis is usually made via a process of diagnostic investigation to exclude other potential causes of the patient’s ill health. It is, therefore, important that clinicians have the training, tools and resources to help them identify fibromyalgia symptoms when a patient presents.

Musculoskeletal conditions are a key part of the generalist undergraduate MBBS medical curriculum. The General Medical Council requires that the MBBS curriculum provides enough structured clinical placements to enable students to demonstrate the outcomes for graduates across a range of clinical specialties, including musculoskeletal health. Musculoskeletal health is also a key component of GP training, and the Royal College of General Practitioners’ curriculum statement on musculoskeletal conditions sets out that GPs should be able to diagnose and manage common regional pain syndromes such as fibromyalgia.

In addition to their clinical training and experience, GPs have at their disposal a number of tools and resources. They include: the Map of Medicine, an online evidence-based guide and clinical decision support tool available to GPs and other healthcare professionals in the NHS, which has a fibromyalgia and chronic pain pathway, and helps clinicians to identify the symptoms and make the right referral; a free e-learning course on musculoskeletal care, including fibromyalgia, developed by the RCGP and Arthritis Research UK, which aims to improve skills in diagnosing and managing musculoskeletal conditions; NHS evidence services, which provide access to a vast online repository of clinical knowledge and guidance covering a wide range of conditions, including fibromyalgia; and a fibromyalgia medical guide for health professionals developed by FMA UK.

Once a patient is diagnosed with fibromyalgia, a number of treatment options are available to them. In the absence of a cure, relieving pain and restoring quality of life are the primary clinical goals. Treatment options include pain relieving medication, physiotherapy, dietary and exercise advice, counselling or cognitive behavioural therapy, and self-management programmes to give patients the skills and confidence to manage their condition. The routine assessment and management of pain is a required competency of all health professionals. Many patients can have their fibromyalgia successfully managed through routine access to locally commissioned services via GPs, and community and secondary care services. I will turn to my hon. Friend’s point about specialist clinics in a moment.

Jim Shannon:

The hon. Member for Reading West (Alok Sharma) and I asked how we can raise awareness within the GP profession to ensure that GPs understand the symptoms of fibromyalgia and diagnose it earlier. As I pointed out in my intervention, only 3% of people in Northern Ireland have been diagnosed with the condition, but the number of people who suffer from it is far larger. There seems to be a gap between those who have been diagnosed and those who have not. Is that because GPs are not really aware of the condition? How can we make them more aware?

George Freeman:

The hon. Gentleman makes an excellent point, and he is helping to raise awareness today. I will pass on the points made today to the team at NHS England with responsibility for this issue. The answer to the question on awareness is to support debates such as this, and to promote the work of the charity and the patient advocacy groups.

The routine assessment of pain is a required competency for all healthcare professionals. However, patients who remain in high levels of pain after conventional approaches to treatment have failed are able to access specialised pain services, which are nationally commissioned by NHS England. Patients referred to such services receive multidisciplinary team care from clinicians with expertise in pain management.

Mr David Jones:

The Minister heard my earlier intervention, and he now mentions specialised pain relief centres, most of which are located in England. He also heard my points about the bureaucratic difficulties experienced by patients living in Wales when accessing such centres in England. Will he liaise with his colleagues in the Welsh Government on whether a smoother path can be achieved for patients from Wales?

George Freeman:

My right hon. Friend is an outspoken advocate for addressing such needs in Wales, in health as in other issues. He will know that pain centres in England are distributed evenly, but they are a devolved matter in Wales and the other devolved Administrations. I will happily write to the relevant people in Wales to highlight the importance of this condition and what we are trying to do in England, and to encourage them to adopt similar best practice. I cannot vouch for their response and, as in other areas, it is a matter for the local Assembly, but I will happily pick that up.

In addition to the specialised pain services that are available, a number of NHS trusts provide dedicated fibromyalgia clinics, such as that at the Royal National hospital for rheumatic diseases in Bath. That clinic offers expert support and advice, as well as a fibromyalgia coping skills programme to facilitate self-management. Some constituents of my hon. Friend the Member for Reading West have raised concerns about the co-ordination of their care; I reassure him and them that improving care and support for people with long-term conditions, and improving the co-ordination of that care, is a central ambition of this Government, as reflected in our mandate to the NHS.

Nick Thomas-Symonds:

Is there not also a social aspect to this—the issue of sufferers being able to support each other? I am delighted to hear the Minister’s point about co-ordination, because improving co-ordination is crucial to such support being more widely and more consistently available across the UK.

George Freeman:

The hon. Gentleman makes an important point. Such co-ordination is happening across different therapeutic areas. Charities have a role in providing a strong voice for patient empowerment. Patient networks, increasingly including social media, allow us to advance the voice of disease sufferers in research, treatment and patient support. I am delighted by the news of today’s amalgamation of the two charities, which can only be a good thing for developing wider understanding and a patient voice in new treatment pathways.
We want everyone with a long-term condition—currently around 15 million people—to be offered a personalised care plan that sets out their needs and preferences for care. Martin McShane, who is responsible for improving outcomes for long-term conditions at NHS England, and Peter Kay, the national clinical director for musculoskeletal care, are working hard to make that happen. I will ensure that the points raised today are passed on to them as part of that work.

My hon. Friend the Member for Reading West mentioned research. Nationally, the Department of Health has substantially increased overall medical research investment from £885 million a year in 2010 to the more than £1 billion allocated for 2015-16. The usual practice of the Department’s National Institute for Health Research, for which I am responsible, is not to ring-fence funds for expenditure on particular topics but to invite and assess research proposals in all areas. Although no fibromyalgia projects are currently funded by the NIHR, the European Commission is contributing nearly €6 million to a project seeking better ways of treating chronic pain, including fibromyalgia. I look forward to the results after the project ends in 2018, and I urge hon. and right hon. Members who are present, Fibromyalgia Action UK and the patients it represents to feed their comments into that project and to welcome the results.
We are considering further ways to showcase the world-class research funded by the NIHR, and we are working in this place, and with the public and charities, to drive accountability. I am working with the NIHR to put together a parliamentary open day to allow Members such as those who have spoken today to see where the £1 billion a year is spent, and to work with charities and patient groups on making applications.

A number of colleagues on both sides of the House have talked about discrimination in the workplace, which is a serious concern for people both in my hon. Friend’s constituency and in local fibromyalgia support groups. It is completely unacceptable if patients with long-term conditions are misrepresented as malingerers at work. Historically, we have seen that happen with other conditions, and as research and understanding of the disease develop, we need to be aware that people who present with conditions that are not well understood may be suffering from diseases that have yet to be properly diagnosed. People with long-term disabling conditions are rightly protected from discrimination in the workplace under the Equality Act 2010. Where a disability, such as one arising from a long-term condition, has been established, the Act requires employers to make reasonable adjustments to ensure that the disabled are not placed at a substantial disadvantage compared with their non-disabled colleagues. Failure of an employer in that regard could amount to direct disability discrimination under the Act.

My hon. Friend and a number of others spoke about the establishment of a network of specialist fibromyalgia clinics. We are aware of a number of dedicated fibromyalgia clinics across the UK, including the UK’s leading centre at the Royal National hospital for rheumatic diseases in Bath, but I will write to Martin McShane, the head of long-term conditions at NHS England, to ask whether more formal networks can be established and whether, with the support of active patients and charities, there is more we can do to develop such groups and to help them to support research into developing new treatments and pathways.

I genuinely thank my hon. Friend for his tireless constituency work to raise this issue, and I congratulate him on securing this debate. So much medicine begins with the small voice of misunderstood patients who get together through charities to promote research, to raise the profile of a disease in this place and elsewhere, to build a head of steam, to bid for research projects—the NIHR stands open and ready to receive bids—and to build cross-party support. I have no doubt that, in the years to come, this work, this discussion and this topic will come to be seen as one of those occasions when the more we come to understand a condition, the more we drive research into cure and diagnosis and the more we improve treatment across the NHS. I warmly welcome his leadership in bringing fibromyalgia to the House’s attention today.

Question put and agreed to.
11.28 am
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Zia2014
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Re: Debate on Fibromyalgia in Parliament

Postby Icarus » Thu Jul 02, 2015 2:39 pm

Zia2014

Thank you so much for typing that out and posting it here!


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Re: Debate on Fibromyalgia in Parliament

Postby Zia2014 » Thu Jul 02, 2015 2:54 pm

Zia2014
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Re: Debate on Fibromyalgia in Parliament

Postby Icarus » Thu Jul 02, 2015 2:57 pm

eBay store: One.Stop.Warehouse

I'm not crazy, I'm just a little unwell, I know right now you can't tell. But soon enough, you're gonna think of me. And how I used to be...me
- Matchbox Twenty: 'Unwell'
Icarus
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