Society Logo
ME/CFS Australia Ltd
Please Click Here To Donate ME/CFS Australia (SA) Inc
 
Facebook
 
ME/CFS AUSTRALIA (SA) INC

Registered Charity 698

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 28,
Hindmarsh,
South Australia 5007

Office:
266 Port Road,
Hindmarsh,
South Australia 5007
Ph: 1300 128 339

Office Hours:
Wednesdays, 10am-3pm


FIBROMYALGIA HELP:
Contact
Fibromyalgia SA
at the
Arthritis Foundation of SA
118 Richmond Road,
Marleston 5033
Ph: (08) 8379 5711

ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

Disclaimer

ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.

Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.

Become a Member
PDF Application Form 2014 (PDF, 243KB)
Why become a member?
 

Commentary: Living with CFS/ME

Sunday 26 June 2011

From the British Medical Journal (via Co-Cure):

 

BMJBMJ 2011; 342:d3836 doi: 10.1136/bmj.d3836 (Published 22 June 2011)

Cite this as: BMJ 2011; 342:d3836

Feature

Commentary: Living with CFS/ME

Ollie Cornes
ollie@cornes.org

During my career I have co-written several books on computer software, worked as a software engineer, and set up and sold two small technology businesses. But in April 1999 I developed tonsillitis with its usual malaise and fatigue. I naturally assumed I would be back to health fairly quickly, but, although the tonsillitis cleared, the malaise and low energy levels persisted. I felt like I was running on fumes. I had no idea why. Then my health deteriorated further.

Months passed, then a year, and now 12 years. I have occasional periods when I’m bed bound, and I am often house bound. I’m always exhausted. I often move around at home like a frail, unstable, elderly man—at the age of 38. It’s certainly made worse by my not knowing what is causing it.

My general practitioner, and many books, suggested the illness was in some way psychosomatic (“yuppie flu,” not a proper illness). I knew in myself this wasn’t true, but there was a nagging doubt. Maybe they’re right? Am I making this up? Am I really sick?

To ensure the illness was not psychological, I worked extensively with a psychotherapist. Rather than finding evidence of emotional issues that could cause my symptoms, the therapy suggested the opposite—that, given how sick I am, I have surprisingly good mental health. It delivered no improvement in my health. In fact the only things I have found that help are to get lots of sleep; to eat a simple diet of fish, vegetables, and pulses; and to almost entirely avoid meat and junk food.

Imagine having the flu, being severely jetlagged, and having not slept for two days but without the sinus and lung congestion—that’s the closest I’ve found to a description of what this illness is like, but it understates it. Sickness has become the new normal for me—my “I’m fine, thanks” is probably the same as your “I feel like death, I need to go back to bed.”

On a scale of 1-10, my energy levels typically range from three to five. Since becoming ill I lack mental clarity; I mix up words, and I have memory problems and trouble focusing. I have an enormous need for sleep, which never refreshes. There is an overwhelming, permanent, and intense malaise. Pushing my limits—for example, with aerobic exercise—provokes a severe worsening.

But I’m actually one of the lucky ones; many are far sicker than me and largely invisible. Doctors will usually see patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) only on a “good” day. Nancy Klimas treats both HIV/AIDS and CFS/ME patients at the University of Miami. In 2009 she told the New York Times, “I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses . . . I would rather have HIV.”1

The Canadian consensus case definition criteria for CFS/ME clearly distinguish it from the UK’s broad, wastebasket CFS diagnosis. The Canadian definition requires the classic symptom of CFS/ME: delayed, post-exertional malaise and fatigue. Even Peter White, who led the largest UK CFS study to date, said recently: “The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME.” I believe CFS/ME is a specific, identifiable disease subset of the UK CFS definition.

Harvey Alter, of the National Institutes of Health, recently said, “I’m absolutely convinced that when you define this disease by proper criteria, this is a very serious and significant medical disease, and not a psychological disease. It has the characteristics of a viral disease.”2

I’m not aware of any treatments offered by the NHS to patients like me, only illness management (pacing, cognitive behavioural therapy, and so forth). My view is that because the UK has used such a loose illness definition we have ended up in this appalling situation where the term CFS is used to group together people with severe depression (or other emotional difficulty) with a group of patients who to the untrained eye look pretty much the same but who have what seems to be a distinct physical illness, particularly characterised by post-exertional malaise. I have enormous sympathy with general practitioners faced with patients who say, “I’m tired all the time. I just can’t get out of bed.” How do they tell the difference? I’d like to see the UK adopt the Canadian definition to encourage research and new clinical approaches with what we may find is a treatable viral or immune dysfunction condition.

Notes

Cite this as: BMJ 2011;342:d3836

Competing interests: The author has completed the ICJME unified disclosure form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declares no support from any organisation for the submitted work; no financial relationships with any organisation that might have an interest in the submitted work in the previous three years; and no other relationships or activities that could appear to have influenced the submitted work.

Provenance and peer review: Commissioned; not externally peer reviewed.

References

  1. Readers ask: a virus linked to chronic fatigue syndrome. New York Times 2009 Oct 15.
  2. Alter HJ. Blood products advisory committee meeting transcript, 14 December 2010.

 

The above originally appeared here.

The BMJ article originally appeared here.

 

 

 


 

blog comments powered by Disqus
Previous Previous Page