Meet the Volunteers: Janet and Helen

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#MEAction is supported by hundreds of volunteers from all around the world. We recently spoke with some of our wonderful and dedicated volunteers working with #MEAction UK and #MEAction Scotland

Today meet Janet and Helen who explain why they got involved and how they support #MEAction UK. 

#MEAction is always looking for new volunteers with ME and healthy ME allies to join our team. If you are interested in helping, please get in touch via this form

Janet

What is your relationship to ME?

My daughter, Emma Shorter, has ME. She was diagnosed in her first term at university in 2012, aged 19. Initially she was moderately ill, but after undergoing GET (Graded Exercise Therapy) she became severely unwell and I became her main carer. I retired nearly three years ago so that I could focus on campaigning for people with ME and supporting Emma; I haven’t regretted it for a second. 

What made you want to get involved with #MEAction Scotland activism? 

The struggle to find a medical professional who understood ME and would support my daughter was horrendous. Emma was sent to the Edinburgh clinic that treated people with ME with CBT/GET; when she started the sessions at the clinic she could walk, by the time she had finished the sessions she was in a wheelchair. The clinic declared that the treatment had been a success. Emma’s experience led her to carry out extensive research into the illness (which her consultant had advised her not to do). We realised that support for people with ME in Scotland was almost non-existent; there was no publicly funded research and the education of healthcare professionals was based on the premise that ME was a psychological illness.   

During her research, Emma heard about #MillionsMissing and we decided to launch the first event in Scotland in May 2017. The success of the first Scottish #MillionsMissing led to us being approached by other people who wanted to volunteer and we decided to set up #MEAction Scotland to fight for improved treatment of people with ME in Scotland.

As our campaign has expanded, I have increasingly become involved with #MEAction UK campaigns as many of them affect what is happening in Scotland. 

Tell us a little about your experience with ME activism. What are the highs and lows? 

Although it has been really tough campaigning for ME, I can think of many high points that have made volunteering very rewarding.

– Working with the other volunteers and ‘meeting’ other people involved in other organisations has been really positive and one of the main reasons I am motivated to continue volunteering.

– Presenting #MEAction Scotland’s petition to the Scottish Parliament’s Petitions Committee in 2018, led by Emma and supported by Professor Chris Ponting from Edinburgh University. Chris has continued to support us wherever he can, despite being incredibly busy, most recently as the Principal Investigator on the DecodeME research.

– Volunteering on the Forward ME stand at the Royal College of GPs’ conference in Glasgow. The interest and engagement of GPs was incredibly encouraging and it felt as though we made a real impact on those we spoke to.

– Organising the “Time for Unrest” event at the Scottish Parliament. This was probably the most stressful thing I’ve done, but incredibly rewarding as we had a great attendance from Members of the Scottish Parliament (MSPs) and fantastic support from other ME charities, local organisations, support groups and individuals from all over Scotland.

– Helping organise three #MillionsMissing Scotland events, working alongside many other Scottish volunteers. It was an amazing teamwork effort and the impact of the ME community coming together was very moving. The virtual event this year worked incredibly well, but I hope that we will be able to have in-person #MillionsMissing events once the current pandemic is under control.

As for the lows, perhaps I have to be an optimist in order to keep campaigning, but I can’t really think of any! Of course, there have been times of disappointments, but working with other volunteers means that we support each other and keep moving forward. 

What gives you hope for the future?

The Scottish Government has responded to our petition with a range of actions; if these are seen through, I am hopeful of change in Scotland. Since launching the petition, we have worked in partnership with ME charities and other organisations in Scotland and it is clear that we can achieve far more by acting together rather than as individual organisations. This willingness to work together is hugely important and will hopefully strengthen our campaigns.

In the UK, I’ve been helping with campaigns around the NICE review of the ME/CFS guidelines and I am hopeful that our campaign to have GET removed from the guidelines will be successful.  

What area of our work do you participate in? 

Scotland General, UK General, Parliament, Press, NICE, Medical Education and #MillionsMissing. 

Why should others join #MEAction? 

We are a small group of volunteers who do amazing work, but we could be doing more if we had more help!  

We are entirely volunteer led in what we do, so volunteers have the opportunity to make decisions and get involved with any aspect of campaigning that interests them.  The support and encouragement from #MEAction Scotland and #MEAction UK volunteers is outstanding and there is a real sense of achievement in the work that we do together.  

What is something not directly ME related that you love?

During lockdown I’ve been swimming regularly in the sea in Edinburgh. It’s usually freezing cold, but I love the feeling of wellbeing that a dip in the Firth of Forth brings!

Helen

What is your relationship to ME?

My daughter had ME for 13 years.

What made you want to get involved with #MEAction Scotland and #MEAction UK activism?

Having gained free time, I was happy to join in with #MEAction’s campaign work and I’m enthused by the real chance of major change now.  

Tell us a little about your experience with ME activism. What are the highs and lows?

I was involved in ME campaigning in the 2000s at the Scottish Parliament. At the time we made some progress in improved understanding by politicians. So, I am deeply frustrated and infuriated by the lack of progress over decades in medical understanding and no improvement in treatment or care for people with ME. Research has moved on a lot in those decades though, so this is an exciting time for that. 

What gives you hope for the future?

I think #MEAction and #MillionsMissing have made a good impact so we have opportunities to achieve the much-needed changes in medical attitudes. Now there is funding going into research and, hopefully, also into medical education.

What area of our work do you participate in?

Scotland General, UK General, Parliament, Press, NICE and Medical Education. 

Why should others join #MEAction?

Social media now gives people more of a voice. #MEAction’s campaigning approach of being primarily run by volunteers and using that collective voice – through video, email campaigns or Facebook – is bringing light to the dark places of many with ME. The large number of emails sent to MPs and MSPs, with people telling their own stories, will have made a difference to those politicians’ perceptions. Politicians are people too and respond as human beings to those stories!

What is something not directly ME related that you love?

Ponies. I am training to be a Riding for the Disabled Association Coach just now although, sadly, we can’t take children riding just now due to Covid-19 restrictions.


Do you want to join our friendly volunteer team and get broad experience within a small organisation? Volunteer now!

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