Michelle Penny – Living with ME for the last 17 years

For the last 17 years, Michelle Penny has been crippled by chronic fatigue and pain, which has left her virtually bed-bound. She tells Rachel Mainwaring what it’s like living with ME at Wales online.

Excerpts:

“I relapsed in October and this is probably the worst I’ve ever been,” says Michelle. “People think it’s just a condition that makes you tired all the time but it’s worse then that. It’s the pain that’s the worst thing. It’s not that I’m not motivated to do things, I just can’t. I just don’t have the energy and my legs really hurt…”

Michelle’s condition means she is also very sensitive to light and noise so, while sitting in bed, she has a slightly darkened room with very little natural light coming in, and plays her iPod very quietly, just to provide some background noise…

“It’s more than just being tired. I have trouble concentrating so I can’t even read books anymore, even though I used to love to read. I also get very random headaches…

 

 

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Dr Betty Dowsett 1920-2012 ME champion

It is with deep regret that we announce the death of Dr Betty Dowsett on June 14 in a nursing home in Cambridge at the age of 91.  In 2001, at the age of 80, and already retired for many years, she was the key speaker at the launch of WAMES in the National Assembly in Cardiff, and continued as our adviser. Her support in our early years gave us the confidence to campaign ‘against the flow’ of the medical tide.

Betty was born in Newport, Gwent and studied medicine at Edinburgh University. She worked as a GP in London then after further studies became a consultant microbiologist. She built up an expertise in ME seeing thousands of people with ME from the 1960s onwards, working with Dr John Richardson and Dr. Melvin Ramsey. She was instrumental in setting up the National ME clinic in Essex with Prof Leslie Findley.

In latter years, she also worked with Jane Colby and The Young ME Sufferers Trust (Tymes Trust), on a groundbreaking study into ME as the cause of major long-term sickness absence from school. She continued to lecture and advise patients and professionals about ME following her retirement, at her own expense. She is quoted as saying “ it is not how old you are but what you can do and you are never to old to do something”.

Simon Lawrence of the 25% ME group summed her up:

“She was someone who was relentlessly courageous in fighting the establishment on their stance of ME. She was sympathetic and empathetic to all who contacted her for help and support. She was someone who did not seek glory or try to make a name for herself in all that she did for others but simply did it because, as a doctor and, more importantly, as a human being, she felt it was her duty to help and, indeed, took great pleasure in helping people with this disease.”

The funeral will be held on Friday, June 29. The family have asked that, instead of sending flowers, people should make donations directly to the M.E. charity of their choice.

Cards should be sent to The Family of Betty Dowsett, c/o The Cottenham Court Nursing Home, High Street, Cottenham, Cambridge CB24 8SS (but do not send donations with your cards).

Bibliography of Dr Dowsett’s papers

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The proof El shaved her head for WAMES!

El Jones with shaved head

El Jones with shaved head

Eleanor with hair

El before the shearing!

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‘ME is debilitating, misunderstood, confusing and unpredictable’

Pippa Bennet describes her experience of ME on the We are Cardiff blog:

12th May is International ME awareness day. You know ME, it’s the lazy people’s disease? Well, it’s estimated that over 28 million people now suffer from it in the world and in the US alone, more people now have ME than AIDS.

I have suffered from ME for 13 years, since I was 14. I got glandular fever and it simply never went away. Instead it mutated into a new, terrifying beast. ME is debilitating, misunderstood, confusing and unpredictable. Even the name is debated. Many people prefer the term CFS or Chronic Fatigue Syndrome over ME which stands for Myalgic Encephalomyelitis. It is pure medical semantics, but they both generally describe the same condition – depending on your doctor’s preferred interpretation! The prognosis is ill-defined and unknown too. The best anyone can tell you is that if you contracted is when you were under 18 then you stand a better chance of one day getting better than if you contracted it over the age of 18…

Read the whole article

Pippa’s blog

 

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Raise awareness with WAMES!

Join us in raising awareness of ME:

  • Wear blue on the 12th (either a blue ribbon or blue clothes) and be ready to tell people why.
  • Join our Awareness event on Facebook (FB) and invite others – tell us about your awareness raising plans and post a photo so we can all share in the event.
  • Follow us on Twitter and tweet about the issues that matter to people with ME and CFS @WAMESMECFS
  • Tell people about our newsblog so they can find out what is happening in Wales.
  • Set up a google alert so that Google can email you when an item of interest appears online – then pass it on to whoever needs to know!
  • Don’t forget to sponsor El Jones to shave her head on the 12th
  • Know a professional interested in finding out more about ME? Ask them to get in touch with Jan to find out about the professionals’ network.Tell them about the IiME conference in London on 1st June and how they can receive a discount.

 

 

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Energy expediture in ME/CFS

A new article has been added to Dr Sarah Myhill’s website:

Energy Expenditure in ME/CFS: Immune wastage of energy and Rituximab

The following have been updated:

Transdermal micro-nutrients

The central cause: mitochondrial failure

 

 

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Eleanor is ‘hair-raising’ for WAMES on 12th May

Eleanor with hair

El Jones is bravely going to shave her head on ME Awareness day, 12th May, in aid of WAMES and invites you to sponsor her.

Eleanor has had ME for 4 years and lives in south Wales.

Her efforts combined with your generosity will enable us to continue working towards a better life for people with ME & CFS in Wales.

Email her with your name, contact details and the amount you wish to sponsor her for, and El will get in touch with you. We’ll post the ‘after photo’ to prove her bravery!

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Low brain activity in CFS

Patients with chronic fatigue syndrome (CFS) had significantly less activation of the basal ganglia in response to a known stimulus compared with a control group, American researchers report.

Brain imaging during a simulated reward task showed reduced activation in the right caudate and right globus pallidus of patients with CFS. The reduction in activity (in the CFS group) correlated with measures of fatigue; the greater the fatigue, the greater the reduction in activation.

Given similar findings in patients treated with the antiviral cytokine interferon-alpha, inflammatory cytokines might be involved in chronic fatigue syndrome.

Fatigue is a common feature in neurologic disorders that involve the basal ganglia, such as Parkinson’s disease and multiple sclerosis. The basal ganglia, which mediate motor activity and motivation, are vulnerable to the effects of pro-inflammatory cytokines, and the effects of interferon-alpha on the basal ganglia correlate with fatigue.

Because dopamine is the primary neurotransmitter in basal ganglia, dopamine metabolism may be important in CFS.

Decreased basal ganglia activation in chronic fatigue syndrome subjects is associated with increased fatigue Elizabeth R Unger et al

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Distinguishing between ME, CFS and CF

There is much debate on the diagnostic classification of Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS) and chronic fatigue (CF). Post-exertional malaise (PEM) is stressed as a key feature.

A Thai study examines whether CF and CFS, with and without PEM, are distinct diagnostic categories.

Fukuda’s criteria were used to diagnose 144 patients with chronic fatigue and identify patients with CFS and CF, i.e. those not fulfilling the Fukuda’s criteria. PEM was rated by means of a scale with defined scale steps between 0 and 6. CFS patients were divided into those with PEM lasting more than 24h (labeled: ME) and without PEM (labeled: CFS).

The 12-item Fibromyalgia and Chronic Fatigue Syndrome (FF) Rating Scale was used to measure severity of illness. Plasma interleukin-1 (IL-1), tumor necrosis factor (TNF)α, and lysozyme, and serum neopterin were employed as external validating criteria. Using fatigue, a subjective feeling of infection and PEM we found that ME, CFS, and CF were distinct categories.

Patients with ME had significantly higher scores on concentration difficulties and a subjective experience of infection, and higher levels of IL-1, TNFα, and neopterin than patients with CFS.

These biomarkers were significantly higher in ME and CFS than in CF patients.

PEM loaded highly on the first two factors subtracted from the data set, i.e. “malaise-sickness” and “malaise-hyperalgesia”.

Fukuda’s criteria are adequate to make a distinction between ME/CFS and CF, but ME/CFS patients should be subdivided into ME (with PEM) and CFS (without PEM).

Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and Chronic Fatigue (CF) are distinguished accurately: Results of supervised learning techniques applied on clinical and inflammatory data.  Maes M, Twisk FN, Johnson C.

 

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Health Minister talks about ME

On 25th April a number of AMs asked questions about services for ME, highlighting the difficulties patients have in finding healthcare from knowledgeable professionals in Wales.

The Health Minister Lesley Griffiths replied:

  • There is a lot of misunderstanding and more needs to be done to improve the understanding amongst the public and medical staff.
  • A lot of work has already been done to improve services, such as providing e-service packages and establishing a task and finish group to investigate the problem.
  • She would consult with the LHBs about setting up a national clinic.
  • Her staff would be writing to LHBs to get an update on how they are developing services.

Health Minister’s questions on ME services 25 April 2012  (Questions about ME begin at 5mins 42 secs into the videoclip.)

NB WAMES has written to the Health Minister asking for more information about the e-learning package she mentioned.

 

 

 

 

 

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