Hope is the Thing with Feathers

 News is breaking here from Dr Jamie Deckoff-Jones MD, that the Nevada based WPI (Whittemore Peterson Institute) research program has been closed by the institute's CEO, and the facility is now locked down. It's former principle investigator, Dr. Judy Mikovits, is in discussions concerning other institutions to which she may move to continue her grant-funded research.

The whole worldwide community of M.E. patients and carers is at a loss what to think. Where does this leave us? What should we believe? Where should we put our efforts now?


Much of hope, spoons and support has been invested by so many.

Emily Dickinson's poem springs to mind:

Hope

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

Hope feels fragile at trying times. It can get very buffeted about when devastating, disorientating news like this breaks on which much is pinned. But the wordless tune has to carry us through towards a future where the truth will certainly finally be known.

As with other diseases, MS, AIDS/HIV, TB, the path to understanding and treatment doesn't always go smoothly or quickly. But I'm hanging in there with gratitude for all who have done their bit towards pushing forward that cutting edge of research and advocacy. You are all heroes and flame-fanners to me!

In a week when I am asking friends, relations and well-wishers to donate to Invest in ME for my 50th birthday here: Joyce's 50th birthday gift for M.E. (already over half way to target, and only a couple of unhelpful psych nay-sayers coming out the woodwork so far!) Invest in M.E has made clear it is independent of the meltdown that seems to be engulfing its US counterpart. Its statement is here and makes its own position clear. I also hope all research may quickly get back on course following whatever derails it. Lives depend on it.

Please let's never give up hope. Let's gently pull together and keep each other hoping and laughing through the gloom and disappointments. We'll always have each other and good people with integrity fighting on our side. I truly believe tomorrow is in safe hands, in spite of every setback.


No word yet on the main Whittemore Peterson Institute website.

No word yet where Dr Judy Mikovits will be continuing her funded research into the retroviruses that are so heavily implicated in the etiology of M.E.

No word at all in the media, as of 3pm, Monday October 3rd 2011 in the UK.

Nothing but disconsolate tweets on Twitter and the social media.

But that "thing with feathers" will one day have a joyful tweet to twitter about the truth, causes and cure of these diseases that are our constant companions today.
Hanging onto that hope with both hands through this "chillest land" and "strangest sea" till tomorrow dawns!

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First official news I have seen at 8.30 pm UK time: not adding much to what was understood earlier in the day:
Wall Street Journal Health Blog 3rd October 2011

Finally, at 10pm UK time, a statement from the WPI itself.