HOME   ARCHIVE   GALLERY   SHOP   ABOUT US      
 

 
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

Please enter your comment below:
 
 
 
SLADS
Salford Live Events
Salford Star contact
Salford Star
Salford Star print
Deli Lama
advertisement
 
Contact us
phone: 07957 982960
Facebook       Twitter
 
 
Recent comments
article: UNISON ACCUSES SALFORD COUNCIL OF LYING TO JUSTIFY SHUTTING DISABLED KIDS HOME
Who can you trust these days. The councillors elected by the people should be, transparent ask questions and research into the ca... [more]
article: UNISON ACCUSES SALFORD COUNCIL OF LYING TO JUSTIFY SHUTTING DISABLED KIDS HOME
So they're doing and saying exactly what they said when The Grange was used for children fir respite. It's under used,it's not vis... [more]
article: UNISON ACCUSES SALFORD COUNCIL OF LYING TO JUSTIFY SHUTTING DISABLED KIDS HOME
I'm sure some behind closed doors council meeting went something like this. "I know, why don't we close down all the services for ... [more]
article: UNISON ACCUSES SALFORD COUNCIL OF LYING TO JUSTIFY SHUTTING DISABLED KIDS HOME
Im not good with figures. But here goes.25 disabled children are being cared for outside the city. Say it costs 500 per child,per... [more]
article: UNISON ACCUSES SALFORD COUNCIL OF LYING TO JUSTIFY SHUTTING DISABLED KIDS HOME
My last comment should have said 600.000... [more]
 
 
 
 
 
Days
Hours
Minutes
Seconds
 
 
 

Donate

Help the Salford Star...

all donations welcome

 
 

More articles...

SALFORD COUNCIL SET TO BORROW 25MILLION TO MAKE TOWER BLOCKS FIRE SAFE

Star date: 16th August 2017

25MILLION FOR NINE PENDLETON BLOCKS AS PUBLIC MEETING CALLED ON FIRE SAFETY

Salford City Council is set to borrow 25million in order to sort its nine Pendleton high rises, after they failed consecutive Government fire safety tests. Who ultimately pays for the work, a Council report states, is "likely to be the subject of dispute", although it believes that Pendleton Together is liable.

Meanwhile a public meeting for residents will take place next Tuesday, 22nd August at Salford Arts Theatre, with speakers from the Justice4Grenfell Campaign, Salford City UNISON and the Fire Brigades Union.

Full details here...

UNISON ACCUSES SALFORD COUNCIL OF LYING TO JUSTIFY SHUTTING DISABLED KIDS HOME

Star date: 15th August 2017

'INACCURACIES' AND 'LIES' IN COUNCIL ATTEMPT TO SHUT THE GRANGE AS STRIKE BALLOT LOOMS

Next week, Salford City Mayor, Paul Dennett, will make a decision on whether or not to shut The Grange, Salford's only residential care home for disabled children.

The Council report recommending the closure has been slated in new counter reports from both the families of children at The Grange and Salford UNISON, which accuses the Council of 'inaccuracies', including over unfilled places... "The so-called lack of demand for The Grange is a lie to justify a cut" it states. The report adds that UNISON members "are willing to consider industrial action in defence of their jobs".

Full details here...

NEW SALFORD COUNCIL STADIUM LOAN WILL TAKE TOTAL TO ALMOST 25MILLION

Star date: 14th August 2017

SALFORD COUNCIL TO HAND ANOTHER 632,000 LOAN TO AJ BELL STADIUM

This week, cash-strapped Salford City Council is set to agree another loan of 'up to' 632,500 for its City of Salford Community Stadium, branded the AJ Bell Stadium.

This will take the current total amount of Council loans for the Stadium - which made another huge loss last year and has net liabilities of over 7million - to almost 25million.

Full details here...

YOUNG SALFORD PEOPLE MAKE NUJ FILM ON REPORTING POVERTY

Star date: 13th August 2017

POVERTY REPORTING NEEDS THE WHOLE PICTURE

Young film makers from the Reporters' Academy in Salford have made a short film about reporting poverty, aimed at journalists who jump on the poverty porn bandwagon.

A variety of people are interviewed in the film about their experiences, urging journalists to have the whole picture on poverty before reporting crap.

Full details here...

SALFORD GROUPS WANTED TO ORGANISE HERITAGE OPEN DAY EVENTS

Star date: 13th August 2017

'ALL OUR STORIES' WANTED FOR HERITAGE OPEN DAYS

Heritage Open Days is the largest grass roots celebration of history and culture in the UK, and takes place between 7th and 10th September, with open days all over the city, from Ordsall Hall to Agecroft Cemetery.

The theme this year is All Our Stories, and organisers are keen for communities to organise new events, which could be walks, talks, poetry readings, or raising awareness of a local building that needs restoring, or maybe saved from demolition.

Full details here...

 



written and produced by Salfordians for Salfordians
with attitude and love xxx