Haywards Heath ME charity announces new patron

Mid Sussex ME charity reMEmber has announced its newest patron alongside important news about the after-effects of Covid-19 and new funding for a study into the causes of ME.
Countess of Mar, reMEmber's newest patron SUS-200625-112323001Countess of Mar, reMEmber's newest patron SUS-200625-112323001
Countess of Mar, reMEmber's newest patron SUS-200625-112323001

Margaret, the countess of Mar, has replaced Sir Nicholas Soames, former MP for Mid Sussex, as the patron of reMEmber.

reMEmber is a charity for people with chronic fatigue syndrome (CFS), or myalgic encephalomyelitis (ME), and was founded by Janice Kent in 1999.

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Janice, who lives in Hurstpierpoint, has CFS/ME, and had discovered there was no service south of London for people with this illness at the time of setting up the charity.

Her efforts have been supported fully by the Countess of Mar and prominent figures in Sussex, including Lord Flight and Nick Herbert MP.

Janice said: “We were very sorry that Sir Nicholas Soames, who had been a patron since 2005, relinquished all his patronages when he left Parliament.

“We are very grateful to Sir Nicholas for the help he has given reMEmber over the years including taking up our concerns with ministers and the chief medical officer, and we wish him well for the future.

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“However we are delighted that the Countess of Mar has agreed to become a patron of our charity.

“We have known the Countess for many years. She invited us to be one of the founder members of Forward-ME in 2008.

“She has worked tirelessly on behalf of CFS/ME sufferers and will continue to do so even though she is no longer taking her seat in the House of Lords.

“Her experience will be invaluable because we anticipate a big increase in CFS/ME type illnesses following Covid-19.”

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“We say this because reports are coming in of previously healthy people who have had coronavirus and have not been able to return to their normal levels of health and energy.

“It seems likely these people are experiencing post viral fatigue or post-viral fatigue syndrome (PVFS) – not exactly the same thing as ME/CFS but very similar.

“If this follows the same pattern as CFS/ME, a number of these people are likely to be unwell and unable to work for a very long time.”

Janice said that funding of £3.2 million from the Medical Research Council and National Institute for Health Research means a research study into the possible genetic causes of CFS/ME will begin next year.

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She said: “The study called DecodeME, will look at saliva samples from 20,000 people who have CFS/ME.

“The study aims for development of diagnostic tests and targeted treatments.

“The study is being funded jointly by the Medical Research Council and the National Institute for Health.

“It is scheduled to begin in September this year and participants will be recruited from March 2021.

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“Anyone with CFS/ME aged 16 or over can register their interest by going to www.decodeme.org.uk.”

reMEmber is holding a sponsored walk on Sunday, July 19, and plans to have its annual conference in Clair Hall, Haywards Heath on Saturday, November 14, social distancing permitting.

For further information about CFS/ME and reMEmber, call 01273 831733, email [email protected] or visit www.remembercfs.org.uk.

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