"We the undersigned petition the Prime Minister to ensure that doctors are educated about fibromyalgia and myofascial pain.

Research shows that between 5-8% of the population suffer from fibromyalgia and chronic myofascial pain, yet most sufferers are not diagnosed until they have suffered for at least 2 years.

We need awareness to be increased so that patients will be diagnosed earlier on and be able to start treatment sooner.

Patients should not have to wait for more than 2 years for a diagnosis of a condition that is so common!

Most medical degrees include only 1 or 2 lectures about fibromyalgia and myofascial pain, despite the fact that more than 1 in 20 people suffer from these painful conditions! Doctors need to learn more about fibromyalgia."

 

"We the undersigned petition the Prime Minister to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome.

The latest DWP Guidelines and PACE are still directing the Health Service to treat ME suferrers with GET and CBT (a tool used for mental illnesses) despite the mounting evidence from a vast amount of research proving that ME is an organic not a psychosomatic disease and that the treatments forced onto those affected do in fact cause more harm than good and can worsen the condition of patients. Money should instead be invested in research into the physiologocal aetiology of ME/CFS and its treatment. Patients should not be forced into becoming psychiatric cases or lose their benefits."

"Clinics are needed on the NHS for fibromyalgia syndrome for diagnosis, treatment and medication. The medical profession need educating about this condition which affects 5% of the population and their families. The clinic can run alongside ME clinics as the debilating condition is identical but more pain is present. Drs should be trained to identify FMS at an early stage as some patients have to wait 20 years to get this. A simple programme can be used for diagnosis as symptoms vary from patient to patient. Most are unable to work due to FMS and help is needed for this also as treatments are expensive and unaffordable to most patients, therefore the NHS which we have all paid into could be in place nationwide, not just privately or in London but locally. WHEN IN RECOVERY PATIENTS WILL BE ABLE TO WORK INSTEAD OF BEING A BURDEN TO THE NHS BUT NEED THIS HELP TO GET THERE."

"Local NHS organisations are responsible for commissioning services to meet the health and social care needs for those living with long-term medical conditions, such as fibromyalgia. They are best placed to know what level of services are required to meet the healthcare needs of their local populations. This may include the setting-up of specialist clinics specifically for those with fibromyalgia or treatment within existing facilities such as pain, chronic fatigue syndrome/myalgic encephalopathy, or rheumatology clinics.

In August 2003, the Chief Medical Officer (CMO) issued a newsletter to all doctors in England about the dissemination of information on fibromyalgia. The CMO acknowledged the condition and the extent to which it affects the population, and raised awareness of a leaflet produced by the Medical Advisory Board of Fibromyalgia Association UK about fibromyalgia, which has now been made available to all GP surgeries throughout the UK. The leaflet offers guidance on the main symptoms, diagnosis and treatment of fibromyalgia together with a brief summary of the current ideas for the underlying pathogenesis.

The National Library for Health Clinical Knowledge Summaries website, www.cks.library.nhs.uk, includes detailed information for health professionals on fibromyalgia. This website also includes a patient information leaflet that GPs can download for those newly diagnosed with this condition.

The Government is committed to ensuring better services for people with musculoskeletal conditions such as fibromyalgia. In October 2006, Andy Burnham launched The Musculoskeletal Services Framework (MSF) -A joint responsibility: doing it differently. The MSF aims to improve assessment, diagnosis and treatment for people with musculoskeletal conditions.

The MSF sets out evidence-based best practice guidance and promotes redesign of services and facilities, maximising the contribution of all healthcare professionals. The goal is to ensure better outcomes through a more actively managed patient pathway, with explicit sharing of responsibility agreed between all stakeholders - all health and social care clinicians and managers, the voluntary and community sectors, patients and the public. As part of an integrated service, multi-professional interface clinics are the keystone of the framework. The MSF is designed to ensure:

• better care and outcomes for people with musculoskeletal conditions, providing them with access to effective, timely services, and enabling them to fulfil their optimum health potential and remain independent;
• closer working between secondary and primary care, with shared responsibility for patient flow, developing better use of resources, agreed care pathways, protocols, thresholds and clinical audit, to ensure that people who need secondary care access the services more efficiently and that those who do not, have access to other therapeutic options; and
• reduced outpatient waits, an 18-week target for referrals from GPs to the start of hospital treatment, and a higher percentage of listed patients having operations - a realistic opportunity for organisations to manage patients and to meet Patient Access Targets and deliver quality patient choice at referral.

The Clinical Standards Advisory Group (CSAG) has recommended that health authorities and PCT commissioners should review local provision of services for people with chronic pain, looking particularly at the provision of more specialised treatments on a networked basis. Services for Patients with Pain: Report of a CSAG committee chaired by Professor Alastair Spence, which can be viewed on the Department of Health's website (new window), shows that many NHS Trusts have developed excellent services for people with pain. We recognise, however, that more needs to be done in some parts of the country to raise standards, and we expect action on CSAG's recommendations to reduce the large variation in the access to care that exists across the NHS. Implementation of the CSAG recommendations rests mainly with local NHS Trusts and commissioners." 

This would be great, if it weren't for two things. Hardly any fibro patient I know has received treatment that fulfilled these aims on the NHS. And Fibro isn't really a musculoskeletal condition.

"The CMO acknowledged the condition and the extent to which it affects the population..."

Fabulous.What a pity not all doctors do so. And acknowldge is all very well, but I would prefer it if that meant they would do something about it. Sympathetic GPs abound and for many Fibro patients that is was constitues a good GP. Personally, I don't them to just say "You have Fibro and I realise that it is horrible for you" - I want them to then actually help! 

"...leaflet produced by the Medical Advisory Board of Fibromyalgia Association UK..."

This is a great little leaflet for people just diagnosed, with information on exercise, for family member, etc. Unfortunately, the definition of Fibro is out of date as almost all research into the mechanisms of Fibro points to it being neurological. And the treatments section in the leaflet is woeful.

"...access to effective, timely services..."

Fibro diagnosis takes years and getting any real treatment often takes years after that. It can be hard to get doctors to add up all of a patients symptoms and end up with Fibro. This isn't helped by the modern NHS policies that mean many people do not have one GP they always see, and that notes made by former GPs on their computer aren't always (if ever???) transferred. Short appointment times don't help either: patients are hardly encouraged to mention all the extra symptoms that the patient themselves may think irrelevant but that to someone who knows the Fibro symptoms can link all the dots. GPs are also inclined to make assumptions and not follow them up - I have personally heard of quite a few people over a certain age that were diagnosed with angina and OA when they had neither, even being prescribed drugs for years before it was realised that actually, they had GERD (reflux disease, something alot of people with Fibro get as having IBS, which most of us do, increases your risk of getting reflux)  and Fibromyalgia.

And there's getting treatment. Almost all GPs don't know enough about Fibro to treat it, even if they can diagnose it, so they refer you - to a rheumatologist. A rheumatologist is a great person to go to for a diagnosis usually as most of the differentials that the NHS rules out are rheumatological - OA, RA, Lupus, etc. I say "that the NHS rules out" because there are plenty of differentials that aren't rheumatological, but many of them - Lyme disease for example - are not tested for on the NHS. But regular rheumies that haven't made a point of learning all about Fibro are used to autoimmune illness, inflammation and damage to the joints. They are used to prescribing NSAIDs, steroids, immune modulatory drugs. As far as medicine knows now, Fibro isn't auto-immune (it certainly isn't in the regular sense) and it doesn't involve any inflammation. There is also no damage to the joints. And everything a rheumy is used to prescribing does nothing for Fibro. So you can end up back at your GP with a suggestion of one or two pain medications to try and nothing else. Alot of GPs do not want to take the responsibility of prescribing something new and funky or strong. They want specialist back up. But there just aren't enough Fibro specialists. The Prof is the best man and most Fibromites can't see him on the NHS. And without their specialist back-up, many GPs simply refuse to prescribe drugs like Lyrica (Pregabalin) and Pramipexole or even the more effective sleep meds.

",,,enabling them to fulfil their optimum health potential and remain independent..."

Proper treament is needed for a Fibro patient to fulfil their optimum health potential. But if you leave the pharmacological medications, then treatment for associated CMP is needed, along with lifestyle management, physio and/or Fibro & individual specific exercise programs and treatment for comorbid or reactive depression and anxiety. If you can get on an Expert Patient Program, then lifestyle management will be covered, although the course is very general. However, not everyone can do the EPP. A referral to an Activity for Health program can help with the exercise, although I got a referral and then never heard any more about it. Physio and counselling, however, are limited on the NHS. You usually only get around 6 sessions, which is not all that great when you have a condition for life. With Fibro, a physio needs to get to know their patient so they can know what they can and can't do and how far they can push them. Without that knowledge, many patients end up, having had their six sessions, with advice that may be completely useless to them. Community Care and Occuptional Therapy are essential for someone with anything more than very mild Fibro to remain independent without paying for services themselves. However, many GPs are ignorant of what is available and how toget it for their patients so the patients often remain in ignorance.

"review local provision of services for people with chronic pain...provision of more specialised treatments"

Pain management clinics often just aren't set up to deal with Fibro. They realise that NSAIDs and opiates don't work great, they may even acknowledge that lifestyle management and alternative or biopsychological techniques can only help so much, but that doesn't mean they find the meds that do work for Fibro pain which may be outside of their normal drug arsenal. My experience with a specialist pain management clinic was dire - after one appointment with the doctor at my local hospital, I then had to travel miles for an appointment (not with the doctor) where I was offered a place on a course of which they admitted I knew everything that would be taught, that wasn't based near my home - and refusing the course meant that they discharged me from the pain clinic.

On 11th May (the day before FMS Awareness Day) my friend lilwatchergirl's girlfriend (know universally as 'The Girl' ) is doing a 17-mile sponsored walk across London for Fibromyalgia awareness and in support of the Fibromyalgia Association UK. They've titled it The Great London Trek for Fibromyalgia Awareness and have set up a website where soon people will be able to sponsor her.

1. To raise money for the Fibromyalgia Association UK - http://www.fibromyalgia-associationuk.org/.
2. To raise awareness of Fibromyalgia, through the blog and (we hope) through some media attention, if lilwatchergirl can get anyone interested.
3. To raise awareness of access issues in London, since The Girl's walk goes along the route of the District Line of the London Underground, which is largely inaccessible for disabled people (it has five accessible stations, out of thirty-one in total, along the route that The Girl is walking).

Please keep an eye on the Great London Trek blog! They will soon be adding a 'donate' button that will allow you to sponsor them by paypal (in any currency, of course!), or you can contact them from there by e-mail if you would like to sponsor The Girl per mile that she walks. They will also be chronicling The Girl's training, and their efforts to raise interest from the media. I'm hoping to arrange to be in London that day so I can join them for part of the trek.