Wednesday, 19 March 2014

Young People Today! & Raising Funds for ME

Having an illness like ME, (that is disregarded by so many) I find it extra poignant when a young person stands up and volunteers to raise funds.  The two stories below capture something special about how families support one another: and that brightens my whole day!

Let me introduce you to two the amazing young ladies that I recently "met" in cyberspace:
Amber Blackmore and Keisha Mawer.  


Amber is 19 and is going to do a Skydive on 21st June 2014 from 15,000 feet - that's the highest you can jump without needing extra oxygen!!  And Amber has never done a parachute jump before!

Amber's mother is fairly severely affected by ME, and Amber says that she is, "hoping this will help get some more donations, so that we can find a cure for M.E."

There are to be 260 jumpers with SkyDive UK on that day, and it is also going to be a World Record Attempt - The current record is 251 skydivers during daylight hours. So every jumper matters!

Amber has set up a Just Giving Page here:

And also has a Facebook Page set up to keep everybody updated. Amber's Charity Skydive for ME Research UK

I'm sure she would be glad of a few more "likes" to help raise awareness for her brave leap for ME!  Go Amber!


Keisha's family have also been affected by ME: both her younger sisters have ME and this has affected Keisha greatly.   So to raise funds for more research, Keisha, aged 17, is going to do two very brave things: 

On 9th May, she is going to cut off her dreadlocks, and for the duration of ME Awareness Week, she is going to dye what is left of her hair BLUE! 

Keisha explains in her blog just how much of a scary thing this is for her, because her dreads are part of her personality.  wanderlust & angel dust: personal M.E. fundraiser // scariest thing ever

Her Just Giving page is here:

And her mum has written a post on the Let's Do it for ME blog about her daughter's gesture: Keisha Mawer is going to chop off her dreads for Invest in ME  Worth a read.

Anyway, I'm fifty, greying a bit and I'd still find it mighty tough to make a gesture like this! Although perhaps if I'm honest it would be the BLUE bit I'd find hardest! I imagine that's not the case for Keisha.  

Whatever, I think this is an amazing act of devotion made by Keisha to her younger sisters. I wish her every success with her fundraising. Go Keisha!

Edited on 4th May to add a link to details of Keisha's Dreadlock removal session: Linky


I know there are many more people doing amazing things now to raise funds for ME research, but the actions of these two brave young ladies came to my attention within the space of a few days and so I couldn't resist giving them both some publicity.  

I hope that you, like me, might also consider sponsoring them.....

Young people today really are amazing!  Go Amber!  Go Keisha!


Saturday, 15 March 2014

Thoughts on Travel and ME

I have recently returned from several days away.  I went to Crufts to see my daughter compete in YKC Agility.  It was worth every moment - but a bit more tricky to accomplish now that I have ME.

In this post I'll just list a few things that I think helped me to get home again without a major relapse.  Perhaps these ideas will be useful for others:

1. We took the overnight ferry  (Belfast to Liverpool), rather than a shorter crossing with more driving.  I also used one of the on-board wheelchairs to get between the cabin and the car deck lifts. 

2. Declaring that I was disabled to the ferry company, meant that they boarded us early and also parked us close to the lifts on the car deck. This made things much easier. 

3.  I used my "wee scooter" in the hotel, as hotel corridors are surprisingly long.  Tim also brought my breakfast back up to our room for me in the mornings.

4.  I used a full size scooter with arm rests inside Crufts.  I also brought a travel pillow so that I could lean forward and rest draped over the scooter handles occasionally!  (& Yes that is dog bedding I'm sitting on - very comfy!)

4. I wore my hat indoors too. I have never been good with glare, and the artificial lights inside are no easier to tolerate than bright sun.  So the hat stayed on!

5.  I brought ear plugs and wore them for a large part of the time inside the halls.  (Long hair is useful for hiding this...)

6.  I took one whole day where I rested in the hotel room.  I just hung the "Do Not Disturb" sign up and chilled, slept and checked a couple of things on FB!  I was really ready for this, and so not at all sad to see the others heading out without me.

7.  My actual trips into Crufts were half days, and I didn't race round shopping like mad.  I did buy a few things though, and even managed to meet a few friends.  (More on the actual trip here and here.)

One final thing that helped - understanding companions, and family; who made everything easy for me.  xx

Sunday, 2 March 2014

Adopt CCC - Initiative by Newry & Mourne ME/FMS Support Group

Newry & Mourne ME/FMS Support Group are campaigning for Northern Ireland to independently adopt the CCC for ME.  Please consider supporting their campaign:

Adopt CCC for ME in N.Ireland  Online Petition.
(Post edited to insert the petition link, which was set up after this post was first written).


There are no specialist ME services in N.Ireland.  Members and supporters of the N&M group held a silent demonstration at Stormont after the recent conference on Exercise Intolerance in ME. A large banner was displayed with pictures of bed bound ME patients, and an additional folder of images and statements of support was produced.

Photo by Jeannette Marley

Joan McParland, founder of the N&M group, explained how there is currently no specialist medical care for the estimated 7000 ME patients in N.Ireland.

She called on the Health Minister, Edwin Poots, to address this situation.  She also asked that the Canadian Consensus Criteria for ME be adopted by health professionals in Northern Ireland.

A document explaining the initiative has been produced, and is copied at the end of this post.

Please show your support by signing the petition here:  Adopt CCC for ME in N.Ireland.

The group intend to show that there is widespread backing for this move.

The issue is much greater than simply the situation in N.Ireland.  As explained, in the document, the issue of how ME is described is a major dilemma across many countries.

Yet it seems much is now changing, and many small initiatives, such as this one, can surely add up to make significant changes for ME patients world over.

Please support this campaign:


A Case for Fully Adopting CCC for ME/CFS in Northern Ireland


Myalgic Encephalomyelitis (ME) is a chronic disabling neurological disease first described by the World Health Organisation in 1969.
Chronic Fatigue Syndrome (CFS) is a name now widely used for ME. Most ME patients however feel that this name trivialises the severity of their condition.
Canadian Consensus Criteria (CCC) is the abbreviated name given to a set of diagnostic criteria produced by an international panel of experts in 20031.
ME/CFS is an abbreviation used in the CCC to denote the disease ME. This document uses the abbreviation ME except when directly referring to the CCC.
Fibromyalgia (FMS) is a painful disabling condition often thought to be part of the same illness spectrum as ME. ME patients who exhibit pain are often given an FMS diagnosis.   


There have been various attempts to produce diagnostic criteria for defining ME. Some descriptors have included patients with depression or other undiagnosed fatigues. This situation can adversely affect research outcomes meaning that treatment recommendations can be misleading.

In the USA, the Department of Health and Human Services (HSS) has recently commissioned the Institute of Medicine (IOM) to produce diagnostic criteria for ME and CFS. There has been huge international opposition to this move, by both the ME experts and ME patients who favour adopting the CCC with immediate effect.

Indeed, 50 international ME experts have now signed a joint letter to the HHS asking that the IOM contract be abandoned and the CCC accepted2. This was backed up by a patient advocate letter signed by 171 individuals3 and an online petition with over five thousand signatories4.

The fifty ME experts agree that the CCC should be immediately adopted both for medical diagnosis and for clinical research. Further they say that the CCC should be used as the basis for future revisions in the light of ongoing research.

Why Northern Ireland should lead the way:

Northern Ireland is in a unique situation, in that it can independently choose to adopt the CCC for ME/CFS.

This move would give local doctors the best means to accurately identify patients with ME and this could potentially lead to better prospects for patient recovery and hopefully an earlier return to a productive life. 

Newry & Mourne ME/Fibromyalgia Support Group have already been pro-active in bringing some of the foremost researchers in ME to Northern Ireland to speak to medical professionals. The most recent being the presentation by Dr Mark VanNess in Stormont for which two Continuous Professional Development points were awarded by the Royal College of Physicians in London. It is hoped that more presentations of this nature will follow.

Current NICE guidelines recommend that ME patients should have Graded Exercise Therapy (GET) to help them recover. GET is now known to be harmful for ME patients (5,6). Adopting the CCC would allow Northern Ireland to take the lead in developing a more sympathetic and paced approach to the treatment of ME.

The fact that currently there are no specialist ME or FMS clinics in Northern Ireland, leaves open the possibility of creating a brand new ME and FMS Clinic that could become a centre of excellence, perhaps even leading the way for ME and FMS treatments globally! The new clinic could adopt a fresh perspective and up-to-date outlook, with diagnostics and treatment options based on the very latest biomedical research. 

Perhaps, the new Centre of Excellence for Public Health at Queen's University Belfast, could collaborate with international researchers to bring the biomedical study of ME and FMS to Northern Ireland?

An estimated seven thousand ME and/or FMS patients in N.Ireland are currently unable to access specialist medical care.  Many of those have lost their livelihood and active lives.  Most would eagerly return to work if their condition could be better managed or improved.

Northern Ireland has a chance to lead the way: by fully adopting the CCC; by promoting the understanding of ME and FMS as physical illnesses; and perhaps even by creating an ME and FMS Centre of Clinical Excellence.


1.  CCC. The full name of the paper is “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols” Journal of Chronic Fatigue Syndrome. Volume 11. Number 1 2003. It is summarised in an overview document found here:   

2. ME letter signed by 50 ME experts can be viewed here:    

3. ME letter signed by 171 patient advocates can be viewed here:  

5. Paper demonstrating adverse effects of exercise: Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome Christopher R. Snell, Staci R. Stevens, Todd E. Davenport and J. Mark Van Ness (2013)

6. Article first published in American and Banking & Market News:  Incorrect Government Information Could Be Hurting Chronic Fatigue Syndrome Patients, New Research Finds (2013)

Proposed by:
Newry and Mourne ME and Fibromyalgia Support Group

With the support of: 

Collection of signatures in progress. 


Status (eg patient, carer, physician, ME or FMS specialist, other position.)
Professional qualifications (if applicable)
Brief background (illness severity & duration, age & work status, or interest in ME or FMS)
Country of Residence (For UK residents please specify if N.Ireland.)
Web address (if applicable)

PS Or just send your name indicating your support......

Link to petition again: Adopt CCC for ME in N.Ireland