Severe ME: ‘Took nearly 40 years to be diagnosed’

Source: Severe ME: ‘Took nearly 40 years to be diagnosed’

Remembering Alison Hunter 1976 – 1996

by Christine Hunter Alison became suddenly ill in 1986 with a high fever, brutal headache and a disturbing myriad of other symptoms. We had no conception of what lay ahead. As the weeks and months …

Source: Remembering Alison Hunter 1976 – 1996

‘Highly Misleading’

OMEGA

An article published today in the journal ‘Fatigue: Biomedicine, Health & Behaviour’ concludes: “The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.”  

‘Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial’
Published online 14 December 2016.
FULL ARTICLE –
http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724
ABSTRACT – http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724
FIGURES & DATA – http://www.tandfonline.com/doi/figure/10.1080/21641846.2017.1259724

BACKGROUND: Publications from the PACE trial reported that 22% of chronic fatigue syndrome patients recovered following graded exercise therapy (GET), and 22% following a specialised form of CBT. Only 7% recovered in a control, no-therapy group. These figures were based on a definition of recovery that differed markedly from that specified in the trial protocol.

PURPOSE: To evaluate whether these recovery claims…

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Spreading the Word

Dr Phil Hammond’s latest column in Private Eye is called ‘Trial on Trial’. You may remember he wrote quite a helpful column about ME just recently. This time he writes in response…

Source: Spreading the Word

Alem Matthees: how an Australian’s FOI request busted open a UK science scandal

Pyrexic Disease (or, Why The Creation of SEID Should Concern Us All)

Documenting M.E.

Since the recent release of the Institue of Medicine’s report recommending the creation of a disease called Systemic Exertion Intolerance Disease, there has been a lot of confusion over what exactly the report says, and whether it is a good thing for patients. Some are claiming the report itself is about something called “ME/CFS” and not ME, and therefore doesn’t apply to ME at all (if you’re confused about the distinct differences between ME and CFS, please read this post). These people tend to see the report as a good thing. Others see the report as further muddying the waters and creating yet another diagnosis where people with varying diagnoses will be thrown together inappropriately. Even the committee members themselves, who claim to have unanimously approved the report’s contents, give varying answers on whether the report concerns ME patients or not. And while some (not all) of these committee…

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Advice For Nurses Working With Severe ME Patients

Some advice for nurses.
Also useful for carers, friends and visitors to help them understand.

Documenting M.E.

The experience of having regular visits from hospice nurses has been a wonderful one, for the most part. The nurses who visit me are skilled, compassionate, intelligent, kind, caring, and just plain good at what they do. Considering I am their first ME patient ever, things have gone extremely well. Several individuals at hospice have taken hours of their own personal time to educate themselves on true ME and how to meet my needs in the best possible manner. Still, it has been a learning process, for all of us. Even I wasn’t entirely sure what to tell them at the start – after all, I’d never had this level of care before. It would take us some time to figure out what works best for me. That said, we pretty much have it down now, so I thought I’d share some of what we’ve learned. Hopefully reading this will…

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It has been a long while since I blogged and I apologise to followers who must have surely given up on me by now.

In October last year my partner was diagnosed with kidney cancer.  We were hopeful he would live longer but in the very early hours of 10 July he lost the fight and passed away.  Sooner than anyone expected.

Bob was a good man, an honest man, and my true gentleman.

my heart is still shattered.  will be for a long time yet.  maybe forever.

one day at a time.  some days I’m okay.  other days. and nights. it all crashes down again and the tears flow and flow.

and have no idea about Where To From Here.

Time will tell I guess.

In the meantime please be patient with me…I will get back to blogging seriously sooner…

                                       …or later.

UN housing investigator’s report exposes Shapps’ lies

Well worth the read.

How to upset Conservative bullyboys

Mike Sivier's blog

Oh, so she wasn’t invited by the government and she didn’t visit government offices, did she?

And did she really not use the proper terms for government policies like the bedroom tax?

The press statement by Raquel Rolnik, UN special rapporteur on adequate housing, on her mission to examine the effects of the bedroom tax on the people of the UK suggests otherwise. In no uncertain terms.

Once again, Grant Shapps is exposed as a liar.

He is the chairman of the Conservative Party, the organisation that tells us it is running the country, and you can’t believe a word he says.

But we’ll let the report speak for itself, shall we?

London, 11 September 2013

Introduction

From 29 August to 11 September 2013, I undertook an official visit to the United Kingdom of Great Britain and Northern Ireland at the invitation of the Government. My visit included…

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SABBATH PEACE

SABBATH PEACE

Mother lights the Sabbath candles
and all the children stand around her
they cast a glance to the candlesticks
full of light and warmth and love

Mother gives a blessing ‘Shabbat Shalom’
and mother prays ‘Shabbat Shalom’
Mother wishes ‘Shabbat Shalom’
to all her family

Mother lights the Sabbath candles
she closes and covers her eyes
and all the children slowly, slowly
whisper a prayer in their hearts

Mother lights the Sabbath candles
and the sun is already turned towards the sea
dusk will fall from above
but light will remain in our homes forever.