Sunday, 26 June 2016

ME Mortality

I have written before about the "living death" of very severe ME, and of patients clinging to life, desperately hoping for medical progress to rescue them. Sadly, some patients don't survive long enough. 

In the last weeks I have heard of the untimely deaths of five ME patients: 

Jodi Bassett, 
Louise Ramage, 
Pat Blankenship,
Tink Bastion and 
Linda Hayes Burke.  

I knew none of these ladies in real life, but their deaths nonetheless feel like a punch in the gut. 

Theirs are not the only ME deaths I've encountered either. The online ME community often morns losses from its ranks, but these five deaths, occurring in such quick succession, highlight a sensitive issue - ME mortality.

So why, knowing ME deaths occur, is ME research is still so agonizingly slow?  

Why is it still hampered by such a significant lack of government funding world over?  

Certainly, noises are being made by government bodies about future funding, but patients sense a complete lack of urgency, when it comes to seeking answers through biomedical research. 

It seems the pounds and dollars are slow to appear for the types of studies we need. 

Another question: Why do we still have publications in respectable journals that describe ME as a condition where mind-over-matter types of therapies are effective?  

Do deaths not indicate something more serious?  

There is a saying that events can become "just another statistic", but what if those statistics are never collected?  

Are the deaths of ME patients recorded? If not, why not?

The frustration that shows in my writing today is, I know, felt by many.  

I hope awareness of the urgent needs of Severe ME patients will one day be exposed.  I hope the outrage our community feels at the untimely deaths of patients like Jodi, Louise, Pat, Tink and Linda, will grow to become a public outrage.  

I hope many more who are not affected by ME will start to ask questions about our situation.

In the mean time, those of us remaining, and still able to campaign, must do all we can to bring ME to the attention of medical professionals and key health decision makers - where ever we are - world over. 

I'm doing what I can.


Post Script: Brought to my attention in comments:
And a post by Jennifer Spotila on Mortality

And from Leela - two more patients:
"Sally. I reviewed the ME/CFS Memorial Page and found that 2 other ME patients, that I didn't know, Sarah Ellis and Pam Carmichel, died in May along with Pat. So that is 7 that we know of in the last 2 months. And how many are unrecorded? "  -  Seven patients in such a short time, it is almost too much to take in. :(

Via a Twitter comment:
Causes of Death Among Patients With Chronic Fatigue Syndrome (2006)

And finally a link to my post "Living Death Disease":

Wednesday, 15 June 2016

The Question of Sleep! (& N:Rem tablets)

Unrefreshing sleep is a symptom of ME, and of many other long term conditions. Indeed, the topic of night-time hours (and of making them as comfortable and restorative as possible) is one that is often debated online.

Luckily for me, I was in the right place at the right time and was offered a free trial of these N:rem foam mattress toppers, in exchange for an honest review of them on my blog.

Disclosure notice: "I have been given this product as part of a product review through the Chronic Illness Bloggers ( network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "

Background: I had seen these mattress toppers mentioned generally favourably on various FaceBook groups, and so I understood that they worked on the principle of giving different parts of our body more or less support according to individual need. This seemed so sensible and simple, that I knew I had to give them a go.

The N:rem website can be seen here: and the toppers viewed here:

Before my month's trial, I found I could mostly sleep through the wee small hours of the night provided I went to bed an hour after midnight and then rose before seven o’clock.  Trying to stay  in bed longer did not produce more sleep - yet I also knew I needed more sleep than this short window provided. Part of my problem, I think, was discomfort making me restless. (I have been attending a chiropractor for many years to keep my back "right"!)

The trial N:Rem system consists of 5 tablets of foam, of differing densities, that can be placed over your existing mattress.  The idea is to re-arrange these tablets so that the softest ones are beneath pressure points that cause you bother, and the firmer ones are then placed to give more support to less tender areas.

On receiving the huge delivery box from the N:rem people, I immediately placed them over my mattress according to one of the patterns in the accompanying literature. I then snuggled down enthusiastically for the first night.

Sadly, that first arrangement did nothing good for my sleep whatsoever! The firmest tablet was WAY too firm for my liking.  I pulled it out and relegated it to the bottom of my bed, where my even my feet rarely reach!

Re-arranging the tablets over the next couple of nights helped me fine-tune an arrangement that suited my personal needs, and remarkably as the month of the trial progressed, I found that I was starting to sleep on longer each morning. Then I discovered that I could also head to bed earlier, and still sleep right through the small hours of the night.

The scientist in me says that this result might not be entirely due to the mattress toppers - that maybe some other factor was at play?

However, the part of me that just happens to like sleeping well, won the internal debate with the logical argument that - I was mighty pleased to get the toppers back again, after I lent them to a friend for a couple of nights!

So the end result is that I really do like this system.  However I have one very small suggestion for improvement.  I think it would be nice to have the option of a narrower piece so that I could place a small slightly firmer strip just about my waist level.

Overall Conclusion:  Thumbs Up! 

And, I’m seriously tempted to get one of their full mattress options in the near future.


PS I probably shouldn’t admit this - but when I took the trial on, and heard that I could keep the tablets after the trial, I remember thinking that if I really didn’t like them, that at least they would make good dogs beds!  Well I’m sorry Finn, but you lost out chum!

Saturday, 11 June 2016

Chasing Competent Care conference report

Hope 4 ME & Fibro Northern Ireland ran an ambitious and exciting conference on Monday 6th June in The Stormont Hotel, Belfast. The conference, “Chasing Competent Care” delivered a strong message calling for change to the currently inadequate care situation for ME and fibromyalgia patients in Northern Ireland.

Chairperson, Martina Marks opened the meeting, welcomed everyone and thanked the Big Lottery Fund for their sponsorship of the event. Her welcome was followed by an empassioned plea from Joan McParland, the founder and treasurer of Hope 4 ME & Fibro NI, to have medical professionals take patients’ symptoms seriously. Joan explained that she had been ill, and operating at less than 30% of her normal capacity, since 1999. In that time no effective treatments had been offered, and one consultant had even suggested she was simply reading too much into her symptoms and that she should see a psychiatrist!

Joan thanked the many volunteers and family members who made the event possible, and also the medical professionals and MLAs in the audience for taking time to attend.

Sally Burch, another charity trustee, then pointed out that ME (myalgic encephalomyelitis) and fibromyalgia are both disorders recognised by the World Health Organisation. She then explained that the most severely affected by ME could be left bed-bound, tube fed and lying in darkened rooms for weeks, months and years! She further described the severely debilitating nature of fibromyalgia and how the invisible pain that sufferers endure can have devastating life consequences. Sally outlined the symptom overlap between these conditions and suggested that biomarker development and medical research was now urgently required.

Lined up, to the side of the speakers’ podium, was a haunting display of over 200 pairs of empty shoes. These were part of the global ‪#‎MillionsMissing‬ campaign. Each pair of shoes carried a tag with the name of a patient unable to participate in their active lives due to ME and/or fibromyalgia. During the conference many attendees took time to read the comments on the tags and to consider the magnitude of the devastation caused by these largely forgotten and ignored conditions.

First speaker up was Dr Joe McVeigh, who outlined the problems with exercise and fibromyalgia. He explained that whilst exercise is important for maintaining health, that it must be conducted at a level manageable for each individual patient. He called this the “Goldilocks approach”, and explained that at no time should attempted exercise cause a patient to relapse.

Professor Malcolm Hooper next gave a strong talk berating the inadequacies and misleading conclusions of the PACE Trial. At one point, he suggested that the PACE Trial was potentially fraudulent and told us that he had once even said as much in The House of Lords. This elicited a spontaneous round of applause from the audience. Feelings run high amongst patients on the PACE trial, mostly because it has been used to support the NHS recommended therapies of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET), both of which have been demonstrated to cause harm in patient surveys.

Professor Hooper questioned the motives of the PACE trial authors in promoting results that carry such marginal benefits and such great potential risks. He recommended that patients reference Dr Mark Vink’s paper, “The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review”, any time they were asked to undertake these therapies.

After this lively and well received talk, the conference paused for a comfort break. The weather was uncharacteristically balmy for Northern Ireland, and some of the audience sat outside in the evening sun as they contemplated the issues raised.

Natalie Boulton, carer to her daughter who has severe ME, spoke next. She opened by showing a clip from the video “Voices from the Shadows”, that gave the audience a disturbing insight into the annihilation caused by very severe ME. Natalie told us she had recently followed up with some of the patients from the video and found many of them had worsened, and that both Emily Collingridge and Lyn Gilderdale had since died. She spoke of the horror of the treatments doled out by psychiatrists who believed patients to be faking their illness. Hers was a genuinely moving and sobering talk.

Next Professor Mady Hornig from Columbia University, USA, gave a detailed and highly informative account of her work towards developing blood biomarkers. She explained how immunity and gut microbiota can be linked to the brain, its functioning and mood. She talked about the epigenetic changes that can occur in the microbiome during a person’s lifetime and the link to serotonin production. She also talked about measuring blood molecules such as cytokines before and after an exercise challenge in ME patients, and comparing these changes to healthy controls. These cytokines being the most promising as potential biomarkers. Although much of what she described cannot be simply summarised, the audience was left with a strong feeling that Professor Hornig is now working determinedly to solve the biochemical riddles produced by ME.

Dr Pamela Bell then took the podium to talk about the problem with pain. Dr Bell has worked extensively in the field of pain, and is now chair of the Pain Alliance Northern Ireland. She emphasised the widespread nature of chronic pain and its disabling effects, noting that once pain becomes chronic it no longer serves a useful purpose in the body. She recognised the difficulties with effectively treating ongoing pain and explained that different types of pain needed different drug types to alleviate symptoms.

The final speaker of the evening was Louise Skelly from the Patient and Client Council of Northern Ireland. She spoke of her frustration at trying to bring about change to the current impasse with Health and Social Care Board in Northern Ireland regarding the care on offer for ME and fibromyalgia patients. She spoke of her determination to follow through with the campaign to improve the situation, and of the great need of these neglected patient cohorts.

Martina Marks then brought the conference to a close. Overall the atmosphere of the evening was one of both frustration, and of optimism. Frustration that change seems to be taking so long to happen and for the injustices that have occurred along the way, but also optimism that things are starting to gain momentum towards real medical advances for the future.

As the hall emptied, the lines of lonely shoes from the #MillionsMissing campaign were gathered up, their labels still attached, and some-one was heard to say: “These are the folk we do all this for - they will not be left forgotten any longer.”

PS Edit to add copy of the letter we wrote to all attendees:

6th June 2016

Dear “Chasing Competent Care” conference attendee,

We are delighted that you have taken an interest in the currently unacceptable care situation for ME & fibromyalgia patients in Northern Ireland.

A large part of the problem is that diagnosis is difficult without accepted biomarkers, and, that there are no specialist consultant physicians in Northern Ireland to whom GPs can refer patients.

Misdiagnosis is known to be a problem in the UK1, and based on patient stories misrepresentation of these illnesses as mental health problems is prevalent.

Furthermore the NICE recommended treatments of Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) that are offered for ME, are now being widely questioned, and patient reports demonstrate clear harms from GET2,3.

CBT and GET are based on the biopsychosocial premise that patients are no longer physically ill. The “PACE trial” 4 that purports to provide evidence to support these therapies is now coming under considerable scientific scrutiny5. Suspiciously, the PACE trial researchers are also refusing to share the data that would validate their claims6.

The Health and Social Care Board in Northern Ireland is currently intending to roll out a Condition Management Programme (CMP) run solely by occupational therapists without the support of a medical consultant-led clinic.

The HSCB lead commissioner for ME and Fibromyalgia services has confirmed that this CMP was initially based on the PACE trial methods. It is now clear that CBT and GET show no long term treatment benefit7, and as mentioned earlier harm from GET is widely reported2,3. The current staff of the CMP pilot are doing their utmost to help patients within their remit but they lack the support of a consultant physician with specialist biomedical knowledge.

It is time for change! Can you help us? Perhaps you could alert health service providers to the difficulties faced by ME and fibromyalgia patients? Or write to the new Health Minister to appeal for change?

The display of empty shoes at the side of the hall is part of the #MillionsMissing worldwide campaign8 orchestrated by The shoes represent those who are unable to participate in normal life because of devastating long-term illness.

We urgently need the support of healthy advocates and sympathetic medical professionals so we can change the current apathy towards the plight of these patients.

Hope 4 ME & Fibro Northern Ireland9 is a registered charity run by patient volunteers. We support the scientific view that myalgic encephalomyelitis (ME) and fibromyalgia are a physical disorders, and that scientific biomedical research is our best hope towards their understanding. Thank you for taking an interest.

We hope you will help spread our message of concern. 

Best wishes,

Trustees and Committee of Hope 4 ME & Fibro Northern Ireland


1. The Newcastle NHS Chronic Fatigue Syndrome Service: Not all fatigue is the same. Newton JL, Mabillard H Scott A Spickett G (2010)

2. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Tom Kindlon

3. ME Association: Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS | 29 May 2015

4. PACE Trial: Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial 5. Virology Blog: Trial by Error: and further articles on Virology Blog here:

6. Valerie Eliot Smith has recorded events regarding refusal of PACE Trial researchers to share data:

7. The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A review

8. #MillionsMissing A global day of protest for ME and CFS: with Belfast details here:

9. Hope 4 ME & Fibro NI website: and Facebook announcements page: