Guess the Weight of my Guinea Pig!

Ros Guinea Pig

Ros Amor is a founder member of the Let’s Do It for ME team and has done a lot of fundraising for IiME despite being severely ill. She is currently still rather wobbly from a relapse at Christmas. As usual, for May ME Awareness week she came up with a suggestion she would like to do –

Guess the Weight of my Guinea Pig!

Guinea pigs have been a great source of comfort and companionship to Ros throughout her illness. Currently she cuddles her guinea pig, Herbert, while she is having her final medicines in the evening and he stays overnight in her room, as he has done for many years. It is well known that a number of severely affected youngsters enjoy similar ‘furrytherapy’.

UPDATE: The competition closed at midnight Sunday 15th May 2016 and the prize: Ethel, a hand knitted guinea pig (value £22) will be posted to the lucky winner Henry A. Thanks everyone for taking part and congratulations Henry!

A bit more about Ros..

When the Let’s Do It for ME campaign launched in July 2011 by a small group of people with severe ME (myalgic encephalomyelitis) to help raise awareness of the work by Invest in ME to establish a Centre of Excellence for ME and funds for the research, Ros made soft wool blue wristbands to sell for the charity, until her health took a turn for the worse and she was moved to a nursing home, fed by nasojejunal tube, where she spent her 21st birthday raising awareness and funds for Invest in ME with the help of the staff and her family. The article pictured below appeared in London Business Matters – the magazine of the London Chamber of Commerce – in December 2012.

The focus of the Invest in ME Centre of Excellence biomedical research strategy is the role of infection and the immune system. Most of the immune system is in the gut. Ros was 8 years old when she got ME after a gut virus. Our initial crowdfunding target of £100,000 enabled the 3-year foundation study on the role of the gut microbiome in ME to get underway in 2013. Our target increased to £200,000 in readiness to fund the next phases of this vital research.

One of the usual problems with ME research is that studies tend to be small and isolated, with promising findings not followed up by larger or replication studies. That’s what makes Invest in ME Research different. It is being carefully designed by leading researchers in their fields, intent on finding answers and establishing diagnostic tests & treatments for this complex, chronic, immune-mediated neurological disease. The latest stage involves the researchers visiting severely ill patients at home to take blood and stool samples.

The other major arm to the Invest in ME Research strategy is currently investigating the role of B-cells and autoimmunity leading to a UK clinical treatment trial of the B-cell depletion therapy, rituximab.

Donate to our fundraising for the IiME Gut Microbiome in ME Research

Donate to our fundraising for the IiME B-cell / Rituximab Research

Guess the Weight of my Guinea Pig!

Invest-in-ME-Rosa-2a

Let’s Celebrate 10 Years of Invest in ME

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May 2016 marks 10 years since Invest in ME registered in UK as a charity for people with Myalgic Encephalomyelitis. No time (or funds) to spare
for celebration as this small band of dedicated volunteers continue their extraordinary efforts leading up to their 11th international Invest in ME
conference & 6th international Biomedical Researchers into ME Colloquium held over the first three days of June. We supporters noted ..

Ten highlights from ten years of work by Invest in ME ..

* Registered in 2006 as a charity intent on changing the way that ME is perceived and treated by medics, politics and media, through campaigning for biomedical research.

* Produce numerous resources for information and education on Myalgic Encephalomyelitis (neurological disorder WHO at ICD-10 G93.3).

* Provide education and training opportunities for medical and PhD students to support the next generation of doctors and researchers.

* Make detailed submissions with practical recommendations to governments in UK, Europe, other countries, most recently the USA National Institutes of Health and Institute of Medicine.

* Co-founded the European ME Alliance of like-minded patient organisations, currently 15 in 13 countries. EMEA joined the European Federation of Neurological Associations in 2015.

* Formed European ME Research Group as the European ME Alliance.

* Worked towards establishing a UK/European Centre of Excellence for ME, based at world-renowned Norwich Research Park, and with national/international collaboration.

* Embarked on a biomedical research strategy to establish tests & treatments for ME as part of the Centre of Excellence project, crowdfunded by the charity and their supporters.

* Their 11th annual international ME conference & 6th international biomedical researchers into ME colloquium held over 1st-3rd June.

* Invest in ME now also known as Invest in ME Research.

Want to join us in congratulating Invest in ME on their 10th anniversary?

SIGN ONLINE GROUP CARD

Want to sponsor the work of Invest in ME?

DONATE HERE

or

Text IBRF33 £10 to 70070

Thank you for your support from the team at Let’s Do it for ME!

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You may also like 10 Years of Biomedical Research – Invest in ME by Dr Leonard A Jason and Zachary Siegel, Centre for Community Research, Depaul University, Chicago, USA. Reprinted with kind permission at An Inspiration for the World.

See various ways supporters are marking this milestone in May Updates.

Successful Start to Secondary School

By Michelle Nunn, whose daughter has Myalgic Encephalomyelitis.

Can’t believe that in a few months’ time Makayla would have done her 1st year at her new school.

It seems like it’s been so much longer. Well actually it has been. Months before open days to look around schools, I sent out emails asking to meet the SENCOs, explaining that Makayla had M.E and wanting to know how they would best deal with her needs. Sounds weird but my thinking was if I left it until the open days staff were going to be too busy to talk to me so I wanted to make sure I had all areas covered. Plus, if Makayla wasn’t well on an open day that wasn’t going to work.

I found one school that really stood out. They understood her illness so well yet other schools did not. I was lucky as we got the school that we wanted. Even better, it’s less than a mile away from us.

Once I found out we got the school that I wanted I made contact with them as it now seemed real. I explained she was on 3 hours a day which they respected and said they would follow. I asked about attendance and was told if she made it in for her set hours, then the hours she was not time tabled in would not go against her. I also explained that she does not do PE. I’ve heard that some schools still like to have the children get changed into PE kit and do something, even if it’s helping the teacher. I asked the school if she could be excused from this, as carrying around PE kit then getting changed was a big waste of spoons. The school were great and said she would not have to do this.

Once school places were announced in March I went into action!! Because I made contact early I was told that I could rent a locker, but lockers went on sale in June, so I would need to log in and rent her one. This heads up was great as I heard a few weeks later there were no more lockers available. Chuffed mum, one less hassle and one less worry.

The new head of year visits the children at their old school. Makayla really found this helpful and what’s more they arranged her visit around her hours.  This was great as they also arranged for Makayla to come in and have a quiet visit around the school with a smaller group of children. Makayla loved this visit. She was one of 8 and they did some pottery, which she wasn’t sure about, but when I spoke to the teacher he was fantastic and went and really helped her and it was so nice seeing her enjoy herself.

Within Makayla’s school, a special department called student services look after ill / SEN children and on the day Makayla went in one of the
teachers from student services came and said hi and took her off to student services to show her around and meet the staff. This was great as it put her mind at rest  and mine too.

Makayla had extra visits at her school from the SENCO, even the head teacher came out to meet her in her own environment plus 2 members of staff from student services.

Transition day came and off she went as happy as anything no worries and true to form I didn’t even get a bye mum let alone a kiss. I really think all the meetings before helped with this. I arranged with student services that if she wasn’t feeling well they would call me and I would go and collect her. Yep I got a call but to my surprise to say she’s doing fine, she had made some friends (sounds simple but she was the only one going to this school from her junior school and because her illness she didn’t know anyone!)  When I went to pick her up she was beaming so nice to see she had a great day.

After this I had a meeting with the SENCO, head of year and student services. We talked about her hours and again they said 3 hrs with no sport. We talked about homework and they do maths online which I was up for as she’s missed so much education but the maths is very easy only takes a few minutes to do . She may get the rare project to do but nothing major. I was really happy with this. I want her keeping up with her studies not falling behind any more.

I asked about the what if  she’s too ill for school was told if I thought she was up to doing a bit of work  they will see if the home tutor was available to come and spend an hour with her. I heard from other mums that children have to be off x amount of days before they will send any one but the school said no they will send out whenever I feel she’s up to it.

Then we talked about the big one, rest break, which is something Makayla hates. I was so impressed that they refused her break times during the school break.. They said she will come out of lesson 5 minutes before the end, have 5 minutes in a quiet room, then she would be ready to go out and have some social time with her friends. They said that for the first few weeks they would make her have a break but after a few weeks they would let her take the lead on this.

I asked about medication. We all know how the pains, head aches etc. can come out of nowhere. I was told she would have a card to leave the class room so she could go to student services and get medication. Or the card would allow her to leave if she wasn’t feeling great.

School trips!!!! I was so worried she would be made to go on trips but no, I was told student services look at the trip and if it’s not suitable then she would be given authorised absence. RESULT.

I then got a call to invite Makayla to attend a summer school for new year 7’s. They said they could do her reduced hours but their main concern was about her making friends and getting comfy in the school learning her way around.

When the tutors were announced we got to meet them one evening. He filled me with confidence. He told Makayla it’s a learning experience and if she struggled or found something that didn’t work or any problem to go to him and together they would get through it together. He gave me his email!!.

On her 1st day I went in and we looked at her timetable we all agreed core subjects only, so no drama, music, art etc.  so that her 3 hours really counted. They even went and got her and included her in the meeting which made her feel special. We set a date for the next meeting to look at how it was going.

I did ask about an EHCP. The senco was honest with me. She said she has a pot of money for students so if Makayla needed anything it would come out of her pot. They also explained how hard it is if the LEA refuse it, then you go for negotiations (sounds like a bitter divorce!!) and she said its stressful and did I really want to go through it, and to be honest, I don’t want any more battles so let it go. We still don’t have an EHCP and not missing it. If Makayla needs any recommendations from the OT such as a tablet, as she has HMS and writing causes pain in her wrists, the school accept the OT recommendation and action it.

One thing that worried me was how would her teachers know she has ME. I was impressed and relieved to hear that any children with illnesses etc.  have their photo sent to all members of staff with a description of illness and the child’s needs. They said they send it to all staff rather than just the staff she would have, just in case someone has to cover a lesson then they all know.

I also found making friends with lunch time support staff helped as Makayla leaves at lunch time 3 days a week and being known by these staff really helps as it stops them questioning her which she hates but she does have a card which says on what days she leaves at lunch time!

After 8 weeks I went back in and pleased to say we upped her by a hour a week. They asked her what she wanted to do and she said she wanted to do drama so that was it.

True to the schools words, they have enrichment days and for those 2 days she was given authorised absence.  Another meeting was arranged after xmas and again we were able to up her hours.

But it did come to a time when she said I can’t do it mum, I can’t do another hour. So I emailed her head of year who said she was so proud that Makayla had taken responsibility for her own learning. She’s still not been able to up it but we are not under any pressure by the school, if
anything the school are saying no hold back she’s not ready.

I felt like a right nagging mum but her junior school was very small and never had to deal with anything like this so if I didn’t contact the new school to get things put in place no one was going to, not because they wouldn’t, but they never had to before, plus I’ve spoken to other mums who have said their schools say yes, we will do x y and z, and have not done anything . I wasn’t made to feel bad by the new school. I’m in regular email contact, even 1st name terms with key staff. Anyone having to do this for September, the sooner the better and don’t be afraid to ask. There are some good ones out there and I have to give credit to Makayla’s school. I’m sure being in such a fantastic environment that’s stress free has really helped her…. And me!

There is no thumbprint diagnostic test or approved medical treatment for children or adults with ME in UK. Makayla is helping to change that.
Read all about her charity fundraising for Invest in ME Research – Makayla Walks with the Animals or DONATE HERE

JULY UPDATE: How wonderful is this?….

Makayla Nunn has managed her 3rd term with a 100% attendance on reduced hours – the first time she’s managed this in 5 years. Her school – Priory Community School – have been so supportive and understanding to all their students with M.E that Makayla presented the principal Mr Coles with the schools very own Prof. LDIFME!
Support Makayla at https://www.justgiving.com/fundraising/Makayla-Nunn

Mr. Coles

Mullingar Walk for M.E.

From Noreen Murphy: Here is the Facebook page for the “Walk For M.E.” that my family & I are organising to raise funds and awareness for M.E. It is taking place on May 14th in Belvedere House & Gardens, Mullingar at 4pm.

Would really appreciate if you could make it.

If you can’t go, maybe some of your family/friends might go in your place?

Even though it’s a 5km walk, we’re only expecting people who are able to do it to participate.
[We don’t mind if somebody is only able to walk from the registration point ✍ ✍ to the coffee shop ☕ 🍰 ] 😀

Belvedere House Gardens & Park is a beautiful place. They have visitors from all over who come to walk, explore and enjoy a day out in fabulous surroundings.

All proceeds are going to biomedical research into M.E. and we need all the funding we can get as our government does not fund ANY research into M.E. The proceeds are going to Invest In ME for biomedical gut microbiome research.

Thanks to all who have supported us so far and we’ve had LOTS of support. It means so much to us.

I’m still hoping that some more of our government reps will join Peter Burke who’s coming to support us.

Find the event on Facebook at https://www.facebook.com/events/1100549473328563

Noreen Murphy

May Awareness and Fundraising for Invest in ME Research

May Updates

Thank you for checking in on our blog for May 2016 ME Awareness and Fundraising for the charity Invest in ME (Research).

We plan to add updates here throughout the month so please contact us to add news of your events. If you’d like to write a guest post, just send us the text and any photos to include, or simply support by sharing the links throughout the month. Also see Fundraising 2016.

ABOUT MAY AWARENESS

The whole month of May is dedicated to awareness of ME (Myalgic Encephalomyelitis). ME Awareness Week 2016 runs from 9th to 15th. May 12th is International Awareness Day for ME and other Chronic Immunological and Neurological Diseases.

The late Thomas J Hennessy was the founder of May 12th, chosen as it is the birth date of Florence Nightingale, who suffered a chronic illness for much of her life, believed to be ME. Outbreaks were recorded since 1934, but it was not until an outbreak at the London Royal Free Hospital in 1955 that the illness was named myalgic (muscle) encephalomyelitis (inflammation in the brain and spinal cord). It was included as a neurological disorder in the 10th revision of the World Health Organisation International Classification of Diseases in 1969, along with post-viral fatigue syndrome (WHO ICD-10 G93.3).

All the more remarkable that well into the 21st Century no diagnostic lab tests or medical treatments have been approved to address the underlying disease process. Patients and doctors have to go around the houses testing for other possible causes of the symptoms and resort to sticking plasters to try to manage the many disabling symptoms. Meanwhile, all manner of well-meaning (and not so well-meaning) myth and magic abound in the fields of media and medicine. Ten years ago, that was about to change.

In May 2006, a small group of patients and parents determined to change the way that ME is perceived and treated registered as the charity Invest in ME. “They are an inspiration for the world, wrote Dr. Leonard A Jason and Zachary Siegel of Depaul University, Chicago, USA.

“10 years of Invest in ME’s dedication to advocate for a marginalized group and the determination to allocate funds in a neglected field needs to be acknowledged and applauded.

This organization has been working in the trenches of ME, and it has been a notable and significant contribution to the field.

Invest in ME has been able to increase awareness and disseminate knowledge to scientists, clinicians, and patients within the ME community. With limited resources, but unlimited creativity and imagination, these patients and their supporters have showed the world what can be done. They are an inspiration for the world”.

Dr. Leonard A Jason and Zachary Siegel, Centre for Community Research, Depaul University, Chicago, USA.

AWARENESS & FUNDRAISING EVENTS FOR INVEST IN ME CHARITY MAY 2016

Thanks to each and everyone for whatever you do for ME in May 2016, whether you or your friends and families are able to take part in events, or to support what others are doing by donating or simply sharing the links to help spread the word. Invest in ME is a small charity run entirely by dedicated volunteers and we really appreciate everyone supporting them. Here are some things you can do.

  • Add our Twibbon to your pictures on Facebook and Twitter (by Sophie Tennent)
  • See our range of Materials for ME Awareness
  • Browse our online shops with campaign and charity logos
      Music artist Mama Chill donates 50% of profit from her online shop to Invest in ME (and 50% to other causes).
  • Check out the excellent page for ME Awareness on Mama Chill’s music site. She’s just released a remix of her ME Awareness track ‘Don’t Say Nuthin’ free to download “in honour of May being ME awareness month and charity Invest In ME’s 10th Birthday”.
  • Do a Walk for ME (organise your own walk) or The Big Sleep for ME
  • Click on these event pages for walks in Isle of Man or Ireland
  • Take Jon Campling’s challenge to say ‘Myalgic Encephalomyelitis’.
  • Do the Chilli ME Challenge for Invest in ME.
  • Make some blue food with Cordon Bleu for ME
  • Light Up the Night Blue for ME Awareness for May 12th
  • Turn your body blue for ME with Julieann Chown, or simply wear something blue
  • Join Team Princess for Invest in ME.
  • Write a blog & join Sally Burch’s #May12BlogBomb
  • Enter Becca’s Prize Draw for Invest in ME (draw takes place on 12th May)
  • Take part in Kayleigh Kavanagh’s Jewellery Rewards from 9th to 14th May.
  • Enter Ros’s Guess the Weight of my Guinea Pig! (draw takes place on 15th May)
  • Invite friends The Frog and Bucket in Manchester on 15th May for Chris Brooker’s Laugh for ME2 comedy night for the second year running for Invest in ME.
  • Support Makayla Nunn as she Walks with the Animals for Invest in ME
  • Dress up for Black Dress Day to see the month out in style on 31st May.
  • Share Caged Bird’s new video The Soul that Sings
  • Share Hidden Voices of M.E. – video released by Sophie Tennent on 30th May to mark the end of ME Awareness Month.
  • See Let’s Celebrate 10 Years of Invest in ME
  • Thanks to Lynne Allan & Alison Orr who ran special offers for the month at ME2UDezignz & Cards 4 Invest in ME & congratulations to Laura Chamberlain on her article published in the June issue of Vintage Life Magazine.

    Please browse our site & share widely.

    To simply donate – click here – or text BMER99 £1 to £5 or £10 to 70070

    Thank you for your support!

    May ME Awareness & Fundraising for Invest in ME Research
    May ME Awareness and Fundraising for Invest in ME Research