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The countdown is on until Fibromyalgia Awareness Week 2018! What will you be doing to raise awareness? Don't forget… https://t.co/EQCZfs9Fos

APPG

All Party Parliamentary Group (APPG) meeting on Fibromyalgia

On a cold, blustery, rainy day around 60-70 of us braved the elements to attend the APPG meeting in London. Umbrellas were not much use when crossing Westminster Bridge! Attendees from England, Scotland and Wales gathered for a coffee reception prior to the meeting where we were able to meet up with fellow FM sufferers, group leaders, regional co-ordinators, trustees and members of the Medical Advisory Board (MAB) as well as a couple of MPs. FM sufferers form a very close knit fraternity and it is like meeting long lost friends when we attend gatherings and meet up again.

The meeting was opened by the Chairman, Rob Wilson MP for Reading East, who welcomed us all and went on to say that, unfortunately, there seemed to be a bit of a clash with Fibromyalgia Awareness Day and the announcement from the Prime Minister, Tony Blair, that he was to resign! Rob went on to explain about e-petitions on the No.10 website and said that there were three on fibromyalgia [actually there are four] and encouraged friends, family and anybody we know to sign these petitions explaining that the more signatures we can get the better to help raise awareness.

They are:

  • Ensure that doctors are educated about fibromyalgia and myofascial pain
  • Improve clinical diagnosis, medication and provide clinics for fibromyalgia patients
  • Finance Medical Research in the UK for the condition Fibromyalgia Syndrome
  • and the one Rob missed was: Ensure those of us with invisible disabilities and illnesses are given a fair deal. 

You can either log onto the 10 Downing Street website http://petitions.pm.gov.uk/ and search for ‘fibromyalgia’ or log onto the FMA UK website http://www.fmauk.org/index.php and click on ‘Sign FM petitions’ which is the 5th option on the left hand side of the screen. 

Rob went on to emphasise that we should ALL write and lobby our Members of Parliament. There are so many competing demands on MPs that it is easy for them to forget about things if their constituents don’t pester them on a regular basis, so he urged everyone to pester their MP and encourage everyone they know to do so also. Finally, Rob mentioned the press release that was going out about International Fibromyalgia Awareness Day and ensured that everyone had received a copy. 

Rob then introduced Norah Wickerson, a Chartered Physiotherapist and Nutritional Advisor, who spoke to us about her Combined Approach to Successfully Tackling Fibromyalgia. Norah explained how she had suffered from undiagnosed fibromyalgia for over 20 years before radically changing her diet to try to get herself well. Norah believes that fibromyalgia is just a collection of symptoms indicating that our body systems are out of balance. By getting our systems back into balance, hopefully, our symptoms will steadily improve. Norah believes that fibromyalgia is the over reaction to everything syndrome. Sufferers over-react physically, mentally, emotionally and, most importantly, bio-chemically. Some of us react almost immediately following an accident, virus or traumatic event; for others it creeps up on over a period of time. 

Norah believes that the components of fibromyalgia are: Reactive Hypoglycaemia; Dysfunctioning of the Autonomic Nervous System; Myofascial Pain and Trigger Points; Biopsychological effects and Problems with Cognitive Skills. The 10 Point Plan of the Combination Approach is:

  1. Understanding Fibromyalgia
  2. Dietary Advice
  3. Eye Exercises
  4. Re-education of correct breathing patterns
  5. Posture and Core Exercises
  6. Body Working Techniques
  7. Exercise to Improve the Lymphatic System
  8. Improve functioning of Adrenal Glands
  9. Improve Sleep
  10. Other self-help techniques.

It is impossible to cover all the aspects of Norah’s presentation here but you can check out her website at www.tacklingfibro.co.uk. Unfortunately, Norah is now at saturation point with patients and already has a 3 month waiting list which is getting longer by the day, but she is willing to respond to emails when she can. You can contact her using the contact form.

Please be patient if it takes her a while to get back to you. Again, unfortunately, to be able to take advantage of Norah’s combination approach, you will need to be able to travel to Derby. A very lively Q&A session took place following Norah’s talk with testimonials from grateful patients and questions from sufferers and medical professionals. In answer to one question, Rob Wilson took the opportunity to explain that his role as Chairman of the APPG is to raise awareness amongst parliamentarians, it is not to do a general UK wide public awareness campaign as that is the job of FMA UK.

He went on to say that it has been very difficult to get MPs to engage in this issue when there are so many other issues that they are already engaged with. There are only around 20-30 MPs who have shown an interest out of around 600; there isn’t yet a critical mass of MPs who take this issue seriously enough to make an impact on Ministers in the Department of Health for them to take it seriously. The APPG does what it can but he reiterated what he said at the start of the meeting that it relies on US to talk to our MPs to enlist their support so as to be able to influence the Department of Health. As APPG Co-ordinator, I again urge you all to lobby your MP to make them aware of your problems and ask them to raise questions in the House of Commons. 

Pam Stewart, Chair of FMA UK, explained that the association had previously written to every Strategic Health Authority (SHA) and Primary Care Trust (PCT) enclosing a medical information leaflet to be distributed to every GP in the country. We had a positive response from two thirds of PCTs and one third had not responded to up to three follow up letters. Of course we have no proof that these leaflets actually got to the GPs or if they actually read them but FMA UK did carry out this campaign. Raising awareness is still an uphill battle with the medical profession. FMA UK does, however, feel that it is slowly winning the battle with medical professionals and they are getting more and more requests for information.

Pam went on to say that this is not something that any one person can do and it is the responsibility of almost every single person with fibromyalgia to keep shouting. Pam said that if anyone would like a medical information pack sent to their GP then all they have to do is send their GPs full name and address to FMA UK and one will be sent out and asked that if anyone has any ideas on how we can make medical professionals take note then please let them know.  

Dr Kim Lawson, member of the MAB and Senior Lecturer at Sheffield Hallam University, said that he trains nurses, physiotherapists and other professionals allied to medicine and was a bit concerned that comments had been made that professionals do not appreciate conditions they have not suffered from themselves. The majority of professionals do not have angina, arthritis or MS and yet are successful in treating those conditions so don’t think that all professionals do not understand. The curriculum for professional health care workers and medics does not allow those people to be trained in every condition that exists and the majority of their training actually occurs once they are qualified through their experiences of meeting patients.

Dr Lawson endorsed Pam’s comment about informing the medical profession and informing health care workers, saying it was a critical issue. It needs to come from the Department of Health but it also needs to come from the general public, so don’t assume that people come out trained and will know everything about every conditions that exists, they are learning all the time. Rob Wilson closed the meeting by thanking Norah for stimulating a lively and interesting debate.  Pam Stewart proposed a vote of thanks to Rob and to his PA Stephanie for organising the event.    

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