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SALFORD COUPLE URGE PEOPLE TO INVEST IN ME
 

Star date: 6th November 2016

IN FOR M.E., IN FOR M.E...

M.E., or Myalgic Encephalomyelitis, is a modern epidemic affecting around 250,000 people in the UK, yet a lack of research means there is little medical help for patients. However, Karen Morris and Stu Nimmo are doing their best to change it.

Karen, an M.E. sufferer, runs a local support group, while partner Stu is constantly doing runs to fundraise for the biomedical research charity, Invest in M.E. Research. Next stop is Machu Picchu in Peru.

Full details here...


Invest in ME Research Invest in ME Research
click image to enlarge

M.E., or Myalgic Encephalomyelitis, is an illness affecting millions of people worldwide, and can cause headaches, hormonal imbalance, immunological problems, muscle weakness, intense pain, neurological and cognitive problems, and sleep problems. It's estimated to be twice as common as MS, with 250,000 people in the UK thought to have the condition...

"In fact the number is ever-growing in this modern epidemic" explains Karen Morris, who has severe M.E. "Yet a lack of biomedical research means there is no known cause or cure, so there's very little, if any, medical help or care for patients. 

"The short amount of money that is given to research tends to focus controversially on psychology, a fact that M.E. patients at large have been campaigning about for decades" she adds.

Karen, a Salfordian, runs a Greater Manchester support group based in Salford and Trafford*, and has created a national feedback survey for patients with M.E. (CFS) via Healthwatch Trafford.**

Meawhile, her partner Stu Nimmo, who works in Salford, runs in loads of events to raise funds for a small unknown biomedical research charity, Invest in ME Research (IiME), which consists of unpaid volunteers who do important research work nationally, run training events for doctors and have set up a global research network.

Stu has taken part in the Great Manchester Run, the Salford 10k and the Manchester Half Marathon, helping to raise over 700. Next up is a sponsored trek to Machu Picchu in Peru, followed by a whole list of running events next year.

Now the couple are looking for people to run alongside Stu as part of an Invest in ME team, or who simply want to donate to the charity.

For further details see Stu's Facebook page click here

To donate see the Just Giving page click here


To read more about the Invest in ME Research charity click here


*To read more about Karen's support group click here

**To see more about the Healthwatch M.E. Survey click here

Karen Morris wrote
at 1:51:51 AM on Sunday, March 19, 2017
HEALTHWATCH ME (CFS) SURVEY 17 MARCH 2017 UK-wide report out today after 2 year wait. This was a patient feedback survey set up for the whole of England in April 2015 to improve services for patients with ME (more controversially called CFS). Now this report is out, what will happen to patients and services? http://healthwatchtrafford.co.uk/about-us/our-reports/ Response below from main contributor and local ME patient. "I am extremely grateful for Healthwatch Trafford agreeing to do a survey, and for it to include whole of England (now UK). I am also grateful for the ongoing support from organisations such as The Patient's Association, Thyroid UK, 25% ME Group, Dr Speight (Tymes Trust), Invest in ME Research and the ME Association. I was very impressed to see Healthwatch Trafford recently set up a similar survey for Fibromyalgia, which is a condition that often overlaps ME (more controversially called CFS). There have of course been some problems with the ME (CFS) survey: the time delay of two years, the use of two psychologists for a Neurological condition, and the fact that it may be used for academic research by these psychologists; the title 'Tired of Explaining' ME is not tiredness, but debilitating fatigue with other symptoms e.g. PEM, frequent prolonged infections (Canadian Consensus); only forwarding information upon request to other local HW and CCGs. However, from the start both myself and Healthwatch have been surrounded by an overwhelming amount of problems and politics which I did not expect. This has taken over my life for the past two years, having an impact on my own health and support. This includes people trying to speak on behalf of others, the under representation of severe patients and children, selected 'reps' (also who I feel may not fit the criteria of ME or typical demographic e.g. gender and age), secret meetings, lack of information and transparency, copycatting and general disrespect for the individual rights of patients under the NHS Constitution. It has also highlighted general problems with the post-Francis Report system for all patients (not just those with ME). These include the process of giving feedback and it being taken seriously; The regulation and accountability of the NHS at every level; Complaints being ignored and/or denied; Being able to speak up politely with evidence, without the risk of being viewed and treated negatively and feeling 'blacklisted'; Local Government; and the regulation of the third sector, amongst other problems. I have sent my concerns and evidence to the media and government in the hope that this will one day change as patient's lives continue to be at risk, including children. Lessons have not been fully learnt from Mid-Staffordshire and subsequent events. That said, I believe that patients with ME (and other conditions) should keep giving polite feedback and evidence direct to watchdogs and similar organisations if we want positive change to happen. We are a very large group of people with a valuable voice. Thank you to everyone who participated." Karen Morris ME CFS Manchester www.memanchester.wordpress.com www.facebook.com/groups/memanchester

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