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 impassioned 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.
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| Joe McVeigh |
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.
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| Malcolm Hooper |
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 Mark
Vink’s paper, “The PACE Trial Invalidates the Use of Cognitive Behavioral andGraded 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.
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| Pamela Bell |
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 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.”
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