Who's sorry now? Norway first to apologise to M.E. patients

 Keep your words soft and tender because tomorrow you may have to eat them.  ~Author Unknown

Norway's Directorate of Health Apologises for Treatment of ME Patients


News item so moving it got me choked up with thankfulness! Me and all M.E. patients alike, I guess.

Thank God  for the Norwegian Directorate of Health's compassion, wisdom, humility and determination to change, clearly coming through in this unprecedented statement:


"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that." -Bjørn Guldvog, Deputy Director General of the Norwegian Directorate of Health

Here in the UK, we've grown accustomed to government ministers who seem to have their faces set against ever saying sorry. Many seem to see apology as a sign of weakness. 

Today this is surely a welcome sign of true strength. The grace to listen to solid research, learn from new insights and the wisdom to embrace these and move forward, is overdue and so welcome now.

I so hope that every Health Authority and government across the world can listen, learn and follow suit.

Now there is no longer any excuse to lock up our fellow M.E. patients in mental institutions, or detain them on psychiatric wards for imaginary conditions that, as we ourselves always knew, they never had. Some are still there, and this must urgently be addressed across the world.

Thank you, the Norwegian scientists behind the Rituximab study that shows M.E. to be an illness involving an immune response.

Thank you to the Norwegian Health authorities who have embraced this, taking the path less travelled, to bring justice and hope to one of the most denied, mocked, misunderstood and devastating diseases of modern times.

‘Cancer drug may also treat Chronic Fatigue Syndrome’, WebMD Health News, 19 October 2011
 
When the news first broke, as it came so hot on the heels of the XMRV disappointments, we wondered what to think. 


I read the research the first day news broke, summarised on the M.E. Association's link above. I joked on Twitter that I hoped the ignorant cynics in the media would not read "somatic" as "psychosomatic"! Even though "autoimmune"/"immune system" are clearly spelled out in the next sentence, we've all experienced hack journalism only too eager to call black white when talking down M.E. and tugging its forelock to the popular psychological school of naysayers.

The two doctors say the results indicate that CFS is in fact a somatic decease. "We think that CFS is an autoimmune decease. The immune system has a central role in this," they say to TV 2 News.  
(sic. 'decease' in the article - should be 'disease' of course.)


With today's news of apologies to M.E. patients and the turning of the tide a little further towards full recognition, care and treatment for our illness, I'm hopeful that those who snicker about it being "all in the mind" will quickly go the way of the Tyrannosaurus, or better still, to be seen as the mythical dragons they really are. Monsters we don't need to be afraid of any more.

Countdown to the big "L" - Invest in M.E. with me to celebrate!

L = 50 in roman numerals.


Today's my last day of being in my "life begins at 40"s.

Looking forward to enjoying some of my favourite "L" things:

Love!

Laughter!

Luvverly people!

Loopiness!

Lingering autumnal smells!

Lustrous autumn colours!

Life-enhancing memories! 

Lockhouses, lighthouses and lots more family history!

Looking through binoculars at my beloved wild birds!

Re-Laxing! (Well, that one was close! Cut me some s-Lack!)

Listening to TMBG, REM, Sparks & other of my favourite music! (John Linnell counts towards the "L" pleasures, too)!

Learning how SWFC have done in the footie! (Maybe not!)

Lying down to recover from frantically enjoying all the above!

Lots of other stuff that doesn't begin with an "L" but I love it anyway!

In spite of M.E. trying its hardest to chip away the will to live for the last couple of decades, it still hasn't managed that, and never will!


Here's to tomorrow! (No big parties or outings this year - just a couple of understanding, loving friends around for a while and then to my Mum's for the weekend & some more fellowshipping - and fellow-ess-shipping!). Here's to the next half century!

Thanks a million to everybody who has already sent me love for my birthday tomorrow, and a special hug to all who have already donated to my charity choice,  Invest in M.E.


If you'd like to celebrate my big half century birthday with me by donating towards the future of all M.E. patients, to fund research, real effective treatments and the hope of a cure, please visit my page:


Joyce's 50th Birthday Gift for M.E.


Even if you can't donate, please just take a look and maybe encourage others to learn a little more about M.E. Together we can bust those myths, push forward the boundaries, lay the trail into a brighter future for everybody!


Love and blessings XXXXX

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!

...............................................................................................
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.

The cost of living with ME: Tread softly because you tread on my dreams

New research into chronic condition reveals long-term cost to UK economy

On the one hand, it's disappointing how M.E. hits the media today mainly because its effects are a drain on the UK economy at a time of austerity.


On the other hand, there is a note of concern, even compassion, hidden in the practical call for our disease to be more effectively addressed.


M.E. has cost the country a lot.


M.E. has cost many of us our careers, our former quality of life, our perception as worthwhile human beings in the eyes of society and press, our future prospects, our dearest dreams.

So this new study by the University of Bristol is timely.
It outlines the impact of the illness on employment and productivity.
But it also reminds people everywhere of the hidden, denied suffering behind those figures:

"In addition to the moral imperative, there is clearly a powerful economic argument for addressing the needs of this greatly neglected patient group," says Sir Peter Spencer, CEO of Action for M.E.

In the end, M.E. patients are long past caring whether it comes via "the moral imperative" to look our way after all these wasted years, or because of the "powerful economic argument" which is the only language those in power understand. We care only that it comes at last.

As Dr Esther Crawley, lead author of the report puts it:


"Above and beyond these financial costs, ME or CFS has a huge impact on quality of life. "

With M.E., we are called to live with that reduced quality of life day in, day out.
This, alongside yesterday's news item I discussed here, we have every reason to feel hopeful again.

“There is an urgent need for more adequate NHS provision for those affected by this often life-ruining illness that is costing so much." The words of Colin Barton, Chair of Sussex and Kent ME/CFS Society.


The hopes and dreams of all of us. 

We have to trust they won't be trampled on this time.

Tread softly because you tread on my dreams - W.B. Yeats

 

The 7 Genomic Subtypes of ME/CFS; the future looks bright and it's down to us!

BMJ Article on the 7 genomic subtypes of ME/CFS

Quotes from the text outlining the 7 subtypes:

'Subtypes 1, 2 and 7 were the most severe.

Subtype 3 was the mildest.

Clinical features of each subtype were as follows:

Subtype 1 (cognitive, musculoskeletal, sleep, anxiety/depression);

Subtype 2 (musculoskeletal, pain, anxiety/depression);

Subtype 3 (mild);

Subtype 4 (cognitive);

Subtype 5 (musculoskeletal, gastrointestinal);

Subtype 6 (postexertional);

Subtype 7 (pain, infectious, musculoskeletal, sleep, neurological, gastrointestinal, neurocognitive, anxiety/depression). 

Conclusion: It was particularly interesting that in the seven genomically derived subtypes there were distinct clinical syndromes, and that those which were most severe were also those with anxiety/depression, as would be expected in a disease with a biological basis.' 

I remember when this study was first publicised, how interesting and hopeful it seemed. Hopes rose that the time when proper full clinical diagnosis, and possible treatment, even a cure, was just around the corner. Hopes rose that there would no longer be any arguments over ME being psychological, but that any anxiety/depression would be seen as just another explicable side effect of a biological disease. Just as depression is a common side effect of diabetes or many other long-term chronic illnesses.

 Then the summer's shenanigans damped us down for a while. The media and others seemed intent on blowing down our castle in the clouds puff by puff.

Reading this again today, I am filled with fresh hope. After all the disheartening bad press about shadowy death threats from crazed activists, after all the rage and vitriol poured out on those who seem not to think it urgent that all of us with M.E. should have our lives back asap.


Now, there's something to aim at that is in all our hands to influence, even the sickest. Now, there is targeted focus for fundraising towards the new vision for a Centre of Excellence for Research and Treatment of M.E. from Invest in ME

If discoveries like the one about possible ME/CFS subtypes detailed above are already happening, how much more is likely to be possible once funding and facilities are in place?

Here's how we can already start helping to make that difference:

Let's Do It For ME! is a patient-driven campaign to raise awareness and vital funds for a UK centre of excellence for translational bio-medical ME research, clinical assessment, diagnosis and treatment for patients, training and information for health care staff, based at the Norwich Research Park in the UK and aiming to work collaboratively with international biomedical researchers.

As stated in my last post here

I've set up a page to encourage those in my life to their bit towards funding for the future of all diagnosed with ME/CFS in the UK. After less than a week, I'm a modest 8% of the way towards my personal fundraising target. And I'm still only 49! This is a real birthday present for my 50th birthday that will keep on giving something back to all of us for lifetimes still to come!

That really will be something to celebrate!

Please stop by and help give M.E. sufferers the chance of a future

You're busy? You don't have a lot of energy "spoons" to spare? 
This only takes a few moments.


Please sign this petition if you feel you can.


It calls for funding into bio-medical research into M.E.  
Not wasting funds on the psychological lobby or big pharmaceutical conglomerates with their own agendas.

The definition of M.E. as a neurological illness as classified by the World Health Organisation is widely acknowledged. However, why is the funding in the UK given to the psychiatric lobby and NOT into clinical or bio-medical research? Is it because this area is monopolised by those with particular vested interests?


Here is the petition: it will take a couple of minutes at most to sign. You can do this from the site itself, or simply log in from Facebook or Twitter.


38 Degrees Petition calling for Bio-Medical Research into M.E.

Here is what I wrote as my comment as I signed:

'M.E. is physically crushing to the lives of children, young people with all their lives in front of them, and hardworking men and women who suddenly have the carpet of health, life and livelihoods pulled out from under them in the misdst of their active plans, joys and dreams. Please don't crush us further by the outrage of calling this merely psychological. Bio-medical research is the only way to unlock this prison so please let this be the path taken in future.'

Please do what you're able and bless you for taking the time.