MEA Fundraising stories: Trying to strike the right balance | 16 September 2017

 


Our fundraisers are all striving to raise money to support people with M.E. and when we report their stories, we are also honouring their efforts.

Fundraisers can be people with M.E. who feel:

  • that despite suffering severe symptoms they want to do something to help
  • they are well enough to take on more demanding challenges
  • recovered and decide to raise funds for M.E. rather than turning their backs and getting on with their lives.

They can be people who don’t have M.E. but have family or friends that are affected. And there are people raising money that have no association with the illness but who just want to help.

Sometimes fundraising stories, particularly those that relate to physical challenges, can seem insensitive or depressing to those who are very ill. Yet for others, these same stories can be inspirational and offer hope.

So how do we try and achieve a better balance to our reporting? Perhaps by recognising the issues and taking steps to ensure our stories are more carefully considered.

 


Concern expressed:

Recently, we received a comment on one of our fundraising stories. We’d like you to consider the points it raises (authors permission to repost has been granted):

“Whilst these stories are ‘good news’ and are to be commended, they do no favours to those ME sufferers who are severely affected.

“The general public is ignorant to the fact that there are different degrees of all illnesses – someone can be actively living life with rheumatoid arthritis while someone else is needing to be hoisted; someone working full-time with MS while another is needing round-the-clock care – but with ME the general public have an even poorer understanding and perception of this illness.

“Stories such as these have no bearing on those of us who struggle so badly with this devastating illness, when getting up and dressed is our ‘achievement’ for the day and difficulty even with remaining upright for any length of time. We are made to feel we have failed, are ashamed to admit we suffer from ME as the constant doubt, derision and blame is too much to bear. I wish I could just ‘learn to accommodate’ this illness into my life.

“I have a Social Service review due (which is nothing more than a cost-cutting exercise by cash-strapped Councils) and live in dread of my ESA Assessment. Daily life is difficult enough but ME comes with so much baggage. After 3 decades, the lack of understanding is as bad as it was in the 1980’s and I accept that it will not change in my lifetime.

“ME Research desperately needs more funding but please could those who are fortunate enough to only be very mildly affected, or have been one of the fortunate few to have made a recovery emphasise this fact otherwise it can be extremely damaging. I and many others have tried very hard to make some improvement but through no fault of our own we have not but we end up feeling we are to blame and until the PACE Trial is shown for the damaging sham it is, this unbearable situation will continue.”

She went on to add:

“A heartfelt thank you to all ME sufferers who fundraise for research into ME – your efforts are greatly appreciated and much needed but there must always be balance within the reporting of them.

“The MEA do a fantastic job especially in fighting so many injustices to do with benefits; social care; medical care; etc, and for raising awareness of this very misunderstood illness – I for one am grateful for that.”

 


A further consideration:

We also featured a story last year, about a young woman with M.E. who felt able to take on a physical fundraising challenge. This story attracted harsh and negative feedback, including personal criticism – with some even questioning her diagnosis.

She not only abandoned the attempt, but the criticism affected her so much that she had to return to using a wheelchair. Clearly, we do not want to see a repeat of this example, but we also do not want our fundraising stories to do less than raise awareness of the reality of M.E.

 


We will do our best

We will in future do our best to ensure that fundraising stories include more background about the person concerned and their personal struggle with M.E.

We will also continue to urge caution to anyone that tells us they want to attempt a physical challenge, and will post a health warning on the fundraising section of our website.

The decision to take on a fundraising challenge must remain that of the person concerned, but we will do all we can to support them – including a celebration of their achievements.

It takes a special kind of person to choose to raise funds for charity, and they all deserve our gratitude and respect.

 


Please help us continue our work

Please donate – whatever you can afford – to help us continue with our work to make the UK a better place for people with M.E. Just click the button below to visit our JustGiving page:

Or why not join the ME Association as a member and become a part of our growing community? For a monthly (or annual) payment you will not only be helping to keep us doing what we do best, but will receive our exclusive ME Essential magazine.

 


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