While sitting at my computer at home I was pleasantly distracted by the sights and sounds of a
group of robins. They sang so freely and joyfully as they bobbed up and down and flapped their
wings in a small puddle that had formed on the carport roof. They seemed so happy and healthy.
As I watched them so naturally enjoying themselves, I wondered: what if a robin were to become
chronically sick with a disease like M.E. (Myalgic Encephalomyelitis)?1 How would the other
robins respond? Who would help the sick bird? What would it do? Would it survive?
Prologue
Those with M.E.
utter our plea,
that the disease formerly known
as Chronic Fatigue Syndrome,
finally be taken more seriously
and that action be taken immediately.
———————————————
Robins don’t know why they sing.
Maybe it’s just their thing,
or they’re in a good mood
because there’s lots of food.
They’re full of life and feel good.
It’s understood:
life is for living
and a beak is for singing.
But from this robin’s beak
the sound has become weak.
Her fire’s down to embers,
yet she still remembers
when she could sing and sing
and dance her little swing,
day after day
in the sun’s ray.
Now she’s caught offguard.
Why is it so hard
to do what robins do,
from here to Kalamazoo?
The other robins know not what to do.
For how long can a bird have the flu?
So one day the other robins met and they did decide,
this sick bird it’s high time for us to chide.
So the head robin took her to task.
The time had come for her to ask:
What is wrong with you?
For how long can you have the flu?
We want you to laugh and dance too.
We don’t know what to do with you.
For long our lives we have all halted.
Day after day you are still so exhausted.
The rest of us robins need to do
what robins everywhere are born to do.
I don’t think any longer we can wait for you.
I’m sorry but I think you know this too.
And so the sick robin she withdrew,
While she decided what to do.
The sick bird she did ponder
and she did wonder.
This bird is not old,
on good days she’s still bold.
But this bird is weak and she’s so tired.
She feels like she’s been fired,
from the life she once knew.
She doesn’t know what to do.
Maybe it’s Chronic Fatigue Syndrome,
for which she must rest and rest at home.
So now she lies on the ground
with no other robins around.
Many days ago they left,
and this bird feels so bereft.
“We’ll be back someday”
is what they did say
“with medical aid,
and not just a bandaid.
Maybe the hospital at the nearby bird sanctuary
can help this bird so sedentary.
Bear in mind,
we’ll leave no robin behind.”
As other robins find mates
she rests and waits.
How long
can she hang on
for that happy day
when the robins return and say:
Hey, it’s okay.
Help is on the way,
any day now, any day.
She’s not expecting charity
only one day parity
with the other birds,
even the buzzards.
Her nervous system’s wired,
and her bird brain is so tired.
Her body for so long has been inactive,
but her mind seems overactive.
Her thoughts go round and round.
A solution needs to be found.
She needs some kind of answer.
She tries so hard to remember,
anything about M.E. she might have heard,
that from her memory maybe could be stirred.
Then this little bird
remembered she’d heard
stories about M.E.,
with some veracity:
That in 1995 the U.S. Congress
did stress
it had allocated to the CDC,
twenty three
to study M.E.
Yes, all of 23,
million dollars
for the scholars.
And in the Post2 she did see
there was trouble at the CDC.
You see, the Director of Viral Programs, Brian Mahy
did not agree with M.E.,
so he unilaterally
set free,
$12.9 million dedicated to M.E.,
to other diseases with which he did agree.
And so with great conceit
and with brazen deceit
he hid this from Congress
which did not impress.
It takes no legal beagle
to know that’s illegal.
But when an earnest
journalist
asked for interviews
that would make the news,
the CDC
was too busy.
Meanwhile at King’s College, across the pond
White, Chalder and Sharpe did correspond,
that an important clinical study
was finally ready.
The time had come
to beat their drum.
It was time to compile
their long-awaited trial.
So long they had striven,
and in February 20113
it came down from London,
or was it Heaven?
White et al
released their PACE trial.
Their results were irrefutable.
Their trial was beautiful.
And so upon the world
it was unfurled.
From the UK to Nantucket
you could read it in the Lancet.
A gift from the UK taxpayer –
the sailor, the tailor and the bricklayer –
all contributed to the cost of 4 million pounds4
for a study that astounds and still resounds.
They concluded you see
that the simple remedy
is Cognitive Behavioural Therapy,
along with Graded Exercise Therapy.
But the science seemed murky
so David Tuller5 and others did study,
very carefully
their methodology.
And so they found
the science was not sound.
And while criticism did abound
White et al held their ground.
In response to the controversy,
to their defence came the eminent Dr. Wessely,
who called the PACE trial a “thing of beauty.”6
It was a trial above scrutiny.
Their trial was definitive and beyond reproach.
It supported their long preferred approach.
Their therapeutic intervention for M.E. –
finally they could practically guarantee.
Their biopsychosocial paradigm7
had finally made the big time.
Lancet editor Richard Horton said it was “remarkable”
and “utterly impartial.”8
So at King’s College they did clap:
PACE had put them on the map.
In the data they trusted;
they knew it was well tested.
And to this day, in their own country
NICE9 has yet to finalize their M.E. policy,
so that the disgraced trial by error
can end its reign of terror.
And though it’s in its purview
the Lancet refuses to review,
the debunked trial
that has caused so much bile.
Though PACE has been discredited,
to this day it’s still not been edited.10
Back in the states
one of our greats,
the good doctor
known as the puzzle solver,
is still on his quest
with little rest.
Stanford’s Dr. Ron Davis11
is working hard to save us.
With his new biomarker,
he is sure to be our M.E. whisperer.
We were all so impressed
with Jennifer Brea’s Unrest12
Though in a tough circumstance
her doc made it to Sundance.
She intelligently
and so eloquently,
showed the world what it’s like to be
someone suffering from M.E.
It was so well conceived,
and very well received.
She really struck a chord,
and won a Special Jury Award.
Yet, little has changed
or been rearranged.
There is more and more evidence,
yet still there is indifference.
And still there is much stigma
towards this 21st century enigma,
that to a medical historian
may actually be Victorian.
So many are dismayed,
that in this third decade
of a new millenium,
there is still pandemonium.
While there is still hope
we can only cope,
and be strong,
for so long.
From those with M.E.,
this is our plea:
We need a real plan.
Please help if you can.
———————————————-
Epilogue
How long can a sick bird wait
and wait,
for those who won’t lead
or who mislead,
to come to their senses
and start mending fences,
or join their collaborators
already in green pastures?
Be strong; move along.
Enjoy the birdsong.
————————————————
Postscript
The robin was in such a sorry state,
that she decided no longer could she wait.
So though weak and weary,
she tried to fly to the bird sanctuary.
But she did not arrive.
She did not survive.
It was another win for M.E.
And another loss for you and me.
————————————————
To the M.E. researchers and their teams, the journalists and advocates, and the health care
professionals working with M.E. patients: Thank you. You are our unsung heroes.
© RD Tailleur May 2021
References
1 What is ME/CFS? Centers for Disease Control and Prevention https://www.cdc.gov/me-cfs/about/
index.html
2 Audit Shows CDC Misled Congress About Funds, by Valerie Strauss (Washington Post, May 28,
1999) https://www.washingtonpost.com/wp-srv/national/daily/may99/cdc0528.htm
3 Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy,
and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial, by P.D. White,
K.A. Goldsmith, A.L. Johnson, L. Potts, R. Walwyn, J.C. DeCesare, et al – February 18, 2011 (The Lancet,
March 5, 2011) https://doi.org/10.1016/S0140-6736(11)60096-2
4 Comparison of treatments for chronic fatigue syndrome – the PACE trial, by ABC Australia, April
18, 2011). https://www.abc.net.au/radionational/programs/healthreport/comparison-of-treatments-for-
chronic-fatigue/2993296
*Equivalent to over $6 million U.S. dollars (based on exchange rates in February 2011).
5 TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study, by David
Tuller (Virology Blog, October 21, 2015) https://www.virology.ws/2015/10/21/trial-by-error-i/
6 The PACE Trial for chronic fatigue syndrome: choppy seas but a prosperous voyage, by Dr.
Simon Wessely (The Mental Elf, November 4, 2015) https://www.nationalelfservice.net/other-health-
conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-
seas-but-a-prosperous-voyage/
7 Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction
and harm?, by Keith J. Geraghty (British Journal of General Practice, August 2016) https://
www.ncbi.nlm.nih.gov/pmc/articles/PMC4979914/
8 Comparison of treatments for chronic fatigue syndrome – the PACE trial, by ABC Australia, April
18, 2011). https://www.abc.net.au/radionational/programs/healthreport/comparison-of-treatments-for-
chronic-fatigue/2993296
9 Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and
management (National Institute for Health and Care Excellence) https://www.nice.org.uk/guidance/
indevelopment/gid-ng10091
10 BMJ: Pressure grows on Lancet to review “flawed” PACE trial, (The ME Association, 24 August
2018) https://meassociation.org.uk/2018/08/bmj-pressure-grows-on-lancet-to-review-flawed-pace-
trial-24-august-2018/
11 A Stanford scientist’s quest to cure his son could help unravel the mystery of Covid-19 long
haulers, by Ron Pryor (CNN, March 12, 2021) https//www.cnn.com/2021/03/12/health/ron-davis-covid-
long-hauler-scn-wellness/index.html
12 Unrest (2017) documentary produced and directed by Jennifer Brea https://www.unrest.film/