Sunday, December 31, 2017

A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

"Telling people who have a debilitating condition such as ME that it's all in our minds, and that we should try harder. I'm the last person in the world who should try harder. That's where it's totally wrong."




https://www.buzzfeed.com/tomchivers/inside-the-controversial-therapy-for-chronic-fatigue?utm_term=.dspm87RbX#.epBQYAXzM

A Controversial Therapy For ME Has Led To Claims Of Death Threats,
Harassment, And Pseudoscience

A recent scientific trial has led to acrimonious debates over chronic
fatigue syndrome, aka ME, and boosted interest in a secretive therapy
that some call a "cult" and others call a "miracle". BuzzFeed News
investigates.

Posted on December 30, 2017, at 1:01 a.m.
Tom Chivers


The publication of a new scientific study does not usually bring about
accusations of libel, alleged death threats, and unprofessionalism.

But in the last three months, a trial into a strange, divisive therapy
for a mysterious illness has sparked exactly that – as well as
boosting interest in the therapy itself, the Lightning Process, a
controversial, much-hyped, and much-despised programme that devotees
describe as a miracle and detractors call a pseudoscientific cult.

The Lightning Process has gained attention for claiming to alleviate
chronic fatigue syndrome (CFS), also known as myalgic
encephalomyelitis (ME), an unexplained and devastating illness. It
manifests as not simply profound tiredness but also crippling pain,
especially after exercise, and a near paralysis of muscles that can
persist for days at a time. There is no known cure. It can last for
years, or decades, or the remainder of a life.

Sufferers are often confined to their rooms or beds, unable to walk.
It often appears to follow a viral infection, but no one knows why, or
what causes it; it is diagnosed only when the symptoms persist for a
period of months and no other cause is found.

Sophie Waterhouse was diagnosed with CFS/ME in 2010. First she had
glandular fever, or mononucleosis, an unpleasant viral infection that
is often followed by several months of profound fatigue. She was 30
years old at the time, and hugely active.

"I refused to accept I was ill," she told BuzzFeed News. "I carried on
doing triathlons and competitive racing. I carried on working hard and
partying hard."


And then, suddenly, she couldn't. "I couldn't move," she said. She had
to quit her job in recruitment. "I had a really successful job, a
really successful career," she said.

Less than a year later, she began the Lightning Process, a private
three-day course costing several hundred or sometimes thousands of
pounds. Its practitioners are keen to say it's not a treatment but a
training, and – in some cases – it has apparently removed the symptoms
of CFS/ME altogether. More than 20,000 people have used it worldwide,
according to its practitioners. Endorsements from the MOBO-winning
singer Laura Mvula and the former England rugby player Austin Healey
are prominent on the programme's website; elsewhere it links to a
glowing report by the TV presenter and Childline founder Esther
Rantzen, who says it rescued her daughter from 14 years of the
disease. (Rantzen also used it herself to prepare for her appearance
on the reality show I'm a Celebrity, Get Me Out of Here.)

The Lightning Process was developed by a British man, Phil Parker, in
the late 1990s. Parker is a former osteopath and hypnotherapist who
was once a teacher on a course that claimed to teach people how to
heal illnesses using spirit guides and tarot cards, but who is now
doing a PhD in health psychology.

The process, or its practitioners, have made some dramatic claims
about its effectiveness. At least one practitioner's website used to
say that it could "help you to completely recover permanently" from
CFS/ME with "no possibility of relapse", and that patients can
"achieve full recovery no matter how severe your symptoms are". Those
claims are now gone but are visible on web.archive.org, and were
recorded at the time by the charity Invest in ME.

Parker's own websites apparently used to make similar claims.
According to the charity 25% ME Group, Parker's website once said the
Lightning Process allowed patients "to automatically, easily and
effectively stop those thought patterns" that he said were "always
present" in ME. And lightningprocess.co.uk, which was described as
Parker's personal website, said it contained "stories of those who
inspired me with how they used the mind body connection to get over
ME/CFS, MS, Depression, Anxiety, Chronic Pain and Eating Disorders and
much more".

However, none of these claims are still available on the internet. The
Advertising Standards Agency (ASA) issued two rulings against Parker
and his companies in 2012 and 2013, saying his websites gave the
misleading impression that the Lightning Process could cure or treat
CFS/ME and other conditions. Other Lightning Process practitioners
have changed the claims on their websites following complaints to the
ASA – the most recent was just last month – that the ASA either upheld
or resolved informally. Parker told BuzzFeed News the claims on his
websites were "quite reasonable – we think the Lightning Process may
help some people with chronic fatigue, some of the time", and said it
was based on a survey of patients that found that 81.3% of patients
had improved, and anecdotal stories.

Despite this, until this year there were no scientific controlled
trials providing evidence for the process at all. But in September,
the first randomised controlled trial looking at the effectiveness of
the Lightning Process for CFS/ME was published. It appeared to show
that it did work for some young people. (In randomised controlled
trials – often described as the "gold standard" of medical research –
subjects are randomly divided, with half given the treatment and half
given a "control" treatment, to see which works better.)

The study, known as the SMILE trial, was widely publicised, mentioned
on BBC Radio 4's flagship news show the Today programme and in several
newspapers. One charity, the ME Association, told BuzzFeed News it had
seen a spike in discussion about the Lightning Process in the wake of
its publication.

But far from ending debate about the secretive therapy, the trial
inflamed it. Not one of the CFS/ME charities – Action for ME, the ME
Association, the 25% ME Group, ME Research UK, and Invest in ME –
BuzzFeed News has spoken to welcomed its findings; they were all
deeply wary. Several experts expressed profound concern over how the
trial was conducted.

BuzzFeed News spoke to the researcher behind the trial – who says she
has had death threats as a result – and five people who have used the
Lightning Process. Their experiences of it differed dramatically.

The details of what goes on in Lightning Process courses is not made
public – the website states little beyond the fact that mental
techniques, "postural exercises", and movements are taught in a
classroom style. Even the methods of the recent scientific trial do
not describe what it involves. But the patients we spoke to told very
similar stories, which also matched the stories of others on the
internet. It is based on a combination of osteopathy, hypnotherapy,
and "neuro-linguistic programming", or NLP.

"I was pretty nervous when I went in," said Paul (not his real name),
a 28-year-old journalist. "There were about seven of us, all looking
super decrepit. And you start doing this routine."

The routine involves putting mats on the floor, each with circles
drawn on them. "One had STOP written on it," said Joan McParland, a
Northern Irish woman and founder of Hope 4 ME & Fibro NI, a charity
for sufferers of CFS/ME and fibromyalgia. "And you say out loud,
'Stop, you have a choice.' And the next one says CHOICE, so you move
off STOP on to CHOICE.

"And then there are two circles in front of you: THE PIT and THE LIFE
YOU LOVE. So obviously you choose THE LIFE YOU LOVE."

As well as that, patients are encouraged to change the language they
used about their disease: "They tell you to stop talking about things
that 'I have' or that 'I am'," said Paul. "Instead of saying 'I'm
incredibly tired," you'd say 'I am doing fatigue.'" Then, he said, the
patient would "move to one side and say 'STOP' and try to do this
powerful physical stopping motion, which should give you some physical
sense of relief, or improvement."

Patients would also use vocal affirmations: Examples patients gave
BuzzFeed News included "I am a powerful genius" and "I am strong like
a tree". The process takes perhaps three minutes, and patients are
told to do it every time they feel their symptoms coming back.
McParland said: "You're told, 'Every time you have a negative thought,
say, Oh my god, I have no energy or I have dizziness or I can't get
out of the bed, get your circles out, get on the floor, say STOP to
the negative thoughts! Choose THE PIT or THE LIFE YOU LOVE, blah,
blah, and this is how you get cured."

As well as the process itself, patients are told about the theoretical
basis of the process. The idea is that the brain's "fight or flight"
response – the "physical emergency response" or PER, as the Lightning
Process website describes it – becomes hyperactive, causing it to
release too much adrenaline and interfere with the immune system. The
Lightning Process, according to its promotional material, teaches you
"how to spot when the PER is happening and how you can calm this
response down, allowing your body to re-balance itself".

Several people described the Lightning Process as "a cult", an
accusation Parker strongly denied to BuzzFeed News. "They brainwash
you," said Waterhouse. "Like a cult." "It is culty and very
dangerous," said McParland, who described it as "self-hypnosis". Even
Michael (not his real name), a man in his late thirties who says the
Lightning Process saved his life, said succinctly: "Looks culty, feels
culty." Paul, however, said it was "kooky" but that he didn't get the
sense of "cult-like piousness" that others had.

Patients report being told that they should keep quiet about the
process itself; a couple even say they were told to dissociate
themselves from people in their lives who are sceptical of it.

Jamie (not his real name), a man in his early thirties who was
diagnosed in 2009 after three years of illness, said: "We were told
that if we have friends who don't believe in the process, then maybe
don't associate with those friends any more, because they might be
stopping your recovery." McParland said she had been told that
"negative people in your life will bring you down", and had been
warned not to start the patients' charity she dreamed of founding.
Waterhouse said: "They told you not to talk to anyone about it, not to
show them what the process is. It would inhibit your desire to do it
because people might be sceptical."

Parker denies that Lightning Process practitioners do this. "That
would be crazy," he said. "If you're doing something that you're
excited about and people are super negative about it, maybe you'll go
'I won't talk to them about it', but we'd never say 'divorce your
wife'."

Some patients also say they are blamed for their own failure to get
better. "They tell you it's your fault if it doesn't work," said
McParland. This is not a new accusation: Some of the young patients
spoken to in a qualitative study of the Lightning Process published in
2012 reported "feelings of being blamed if the treatment didn't work".

Again, Parker strenuously denies this. However, application forms for
the Lightning Process reportedly used to include the disclaimers "I
accept full responsibility for the effects of applying or not applying
the Lightning Process to my life" and "I understand that learning the
Lightning Process in itself does not guarantee me good results,
because I alone am responsible for applying or not applying it".

Now the application forms have a much more toned-down version: "It is
then up to the student to apply the lessons for themselves in order to
achieve the benefits. If the student doesn't apply the training, then
they will naturally see very little benefit." However, the old version
is still partially visible in cached Google results on a
practitioner's site.

Jamie raised another concern. One of the other patients at the clinic
he went to in 2009 didn't have CFS/ME but multiple sclerosis, a
disease of the nervous system that can lead to severe disability. "The
thing that sticks in my mind, because I was so disgusted by it, was
the sight of the guy with MS struggling to jump around on the mat,
half in tears
, doing a jump, saying to himself 'I'm strong like a
tree'," Jamie said.

Claiming to be able to treat many different conditions with the same
treatment is often a sign of pseudoscience, Dr Charles Shepherd, the
medical adviser to the ME Association charity, told BuzzFeed News. "In
all seriousness, if the Lightning Process can treat and restore people
with depression, tics, Tourette's, multiple sclerosis,
obsessive-compulsive disorder, the list goes on, in a matter of three
days – it's Nobel Prize material. The NHS would save billions."


Parker said Lightning Process practitioners do work with people who
have MS, but that they don't claim it works for everyone. "If you have
MS and are wondering whether the Lightning Process can fix it, I would
say, 'Well, we've had some success in the past, but also some people
have had no change whatsoever.' So maybe there's something going on
here, but there's no guarantee it will make a difference."

It's easy to see why the promise of the Lightning Process is so
appealing to people with CFS/ME. "They give you buckets of hope,"
McParland said. "They hype you up so much. And with this disease, you
don't have much hope."

McParland had been ill for a long time. "At that stage I was about 10
or 12 years sick," she said. In October 1999 she had a viral illness,
and it led to ME. "You never recover." So around 2011, she heard of
the Lightning Process through word of mouth, and got in touch. She was
called back soon afterwards. "We were told we'd have a life-changing
weekend," she said. "They know all the right buzzwords to say.

"They're very good on the phone, and by the time you've finished the
15-minute phone call you're all geed up that you're going to get
better." The phone call is not just selling the Lightning Process to
the potential patient; "it's to see if you're a suitable candidate"
for the treatment, said McParland.

Waterhouse's experience sounds similar. "You're willing to try
anything," she said. "You're in an incredibly vulnerable state. You're
desperate, because every doctor is turning you away and can't help
you.

"And these people tell you that they can help you, when you're at your
absolute worst."

BuzzFeed News also heard two stories of remarkable recovery after the
Lightning Process. Michael, who works in the media, underwent it in
2007. He had been confined to a darkened room, hypersensitive to
light; he lacked the strength to walk, and had contemplated suicide,
having heard stories of people being sick with CFS/ME for decades.

The Lightning Process, he said, turned him around, almost immediately.
"It made me better," he told BuzzFeed News. "Better than I was
before." He had suffered from depression and anxiety before being
struck down with CFS/ME; now his depression is gone and his anxiety,
he said, is "minimal".

Paul said something similar. "It had an effect within a couple of
days," he told BuzzFeed News. When he went along for treatment, about
two and a half years ago, he had been bedridden for months; he was
living with his parents. "I'd got this weird thing where my legs kind
of stopped being able to function when I walked," he said. He, like
Michael, had been terrified of the disease lasting the rest of his
life: "The internet is full of horrible, horrible stories about
chronic fatigue," he said. "About how it can last forever, about how
people have it for years and years and years."

But after his first day of the Lightning Process, he left the building
on foot. Two weeks after the end of the course, he went back to work.
Would he use the word "cured", BuzzFeed News asked? "Yeah," he said,
"100% cured."

Positive stories of recovery like these are all over the Lightning
Process website, and the websites of licensed practitioners. The
site's "research" page includes the survey that found 81.3% of
patients report improvement. And as of September this year, the
process's promotional materials have included the more formal
scientific study that changed everything: the SMILE trial.

The story of the SMILE trial began in 2010, when Professor Esther
Crawley of the University of Bristol got permission to carry out a
randomised controlled trial into the Lightning Process. She looked at
the "clinical and cost-effectiveness of the Lightning Process" in
children with CFS/ME, taking about 100 young people and dividing them
up at random into two groups. One group had standard medical care, and
one had standard medical care plus the Lightning Process. The study
found that children who also had the Lightning Process reported better
physical function and school attendance than those who just had
standard care. It also found that these improvements lasted – the
children were followed up after a year, and were still doing better.

But charities have been concerned about the study from the start, they
have told BuzzFeed News. First, several patients and charities said it
was unethical to do the first trial of an untested procedure on
children. A spokesperson for 25% ME Group told BuzzFeed News: "We are
definitely 100% against the SMILE trial. We are extremely worried
about what they're doing with children in this area." They expressed
concern when the trial was proposed as did other charities including
the Young ME Sufferers (TYMES) Trust and the ME Association. Crawley
says she doesn't understand why the charities are so negative, but
that the children in her clinic and their parents were keen that the
trial be done.

There has been historical mistrust of research into CFS/ME, including
controversy over another divisive trial, a study into "graded exercise
therapy" that helped lead to the NHS recommending that therapy for
CFS/ME sufferers. The PACE trial, as it was known, was savagely
criticised by some patients and academics amid accusations of bad
trial design and other poor practices. The trial's authors still stand
by it, as does the Lancet journal that published it in 2011.

When the SMILE study was published, many had similar concerns. John
Edwards, professor emeritus of connective tissue disease at University
College London, told BuzzFeed News the fundamental problem was that
the research was "unblinded, with a subjective outcome".

In the highest-quality medical trials, subjects are "blinded" – they
don't know whether they're getting the treatment that's being tested,
or what it's being tested against. It helps stop the results being
biased in favour of the treatment. If you can't blind the trial, said
Edwards, then it's important to ensure that you measure something that
can't be affected by patients' perceptions. "You can have an unblinded
trial and measure everyone's blood sodium concentration at the end,"
he said. "They can't do anything to their sodium concentration, so it
doesn't matter if they know whether they're getting the treatment or
not.

"And the other way around is fine: If you blind everything so they
patients don't know if they've had the treatment, then you can use a
subjective measure. But you can't have an unblinded trial and a
subjective outcome." But the SMILE trial was unblinded, and the
outcomes – which initially were intended to include an objective
measure, school attendance – were changed after the initial proposal
to a questionnaire. Edwards said such self-reported measures are often
prone to bias, as subjects give the answers they think they are
expected to give. For that reason, he believes, the trial is
"useless".

The problem was, in some eyes, made worse by the fact that
the methods
of the Lightning Process involve making people say that they feel
better. "All this trial shows is that if you tell people to say
they're better, and then ask them if they're better, they'll say
they're better,"
said Edwards. "It's a textbook case of how not to
design a trial."

He claims the SMILE trial's results also undermine the PACE trial –
which also used an unblinded trial with subjective outcomes – by
showing that "the same techniques can get you the same answer for a
completely quack therapy based on complete nonsense like standing on
pieces of paper and telling your disease to stop".

In response, Parker told BuzzFeed News that "pejorative labels such as
'quack' [are] well past their sell-by date" given that the Lightning
Process "has been shown, via a peer-reviewed RCT, to have some
efficacy", and that "a number of medical doctors and researchers have
observed the Lightning Process – their opinion has been completely the
opposite and said that it is based on sound understanding of anatomy,
physiology and neuroscience".

Dorothy Bishop, a professor of developmental neuropsychology at the
University of Oxford, told BuzzFeed News she was also concerned about
the "wisdom of running a trial [into something] that doesn't seem to
have much scientific basis and is commercial, because if you find a
result you end up giving huge kudos to something that may not deserve
it".

"I don't want to come down like a ton of bricks on Esther Crawley
because I think she's doing her best," she said, but she was concerned
about a "a mega-placebo effect".

Crawley told BuzzFeed News it was possible that there was some placebo
effect involved, but that the questionnaires she used in the trial
asked questions about how far you can walk and how much school you
attended, rather than simply whether people felt better. She added
that self-reported school attendance lined up very well with the
schools' records of attendance.

The SMILE trial appears to have had concerning effects for Crawley
personally. The University of Bristol has said she has experienced
"significant harassment and personal abuse over several years",
including "blogs/tweets and other social media posts that could be
regarded as defamatory". Crawley has claimed in the press that she has
received death threats.

It's far from the first time that research around CFS/ME has led to
claims of harassment. One researcher, who wished to remain anonymous,
told BuzzFeed News: "The last time I said anything public about CFS, I
got followed around by an angry mob for about a year, on Twitter and
email. Some even turned up to talks I gave, and I've heard of them
turning up to people's houses or doxxing them."

The campaigning journalist and academic David Tuller of the University
of California at Berkeley – who has written for BuzzFeed in the past –
has written lengthy blog posts claiming Crawley's research was flawed.

He told BuzzFeed News that Crawley had accused him of libel and
harassment. A photo shared on social media of Crawley giving a talk
showed a slide saying "libellous blogs", with a screenshot of one of
Tuller's posts. In audio of the Q&As of another talk, heard by
BuzzFeed News, Tuller asks her how he had libelled her and Crawley can
be heard telling him he had been "unbelievably defamatory and
unprofessional". Crawley declined to talk about the issue when asked
by BuzzFeed News.

Tuller denied to BuzzFeed News that he had been libellous or
threatening, although he admitted being rude. "Just because she finds
what I've written offensive and obnoxious, that doesn't mean that it's
libellous," he said. "It just means she finds it offensive and
obnoxious."

The University of Bristol told BuzzFeed News that "private and
confidential communication has taken place at a senior level between
the two universities" regarding Tuller's behaviour. Professor Arthur
Reingold, Tuller's superior at Berkeley, confirmed that this was the
case, saying: "Both UC Berkeley and the University of Bristol believe
strongly in the principles of academic freedom and the ability to
engage in robust scientific debate. The two universities are also
interested in seeing that such debates occur in a civil manner so that
the genuine issues of scientific discovery and research methods are
not lost in arguments of a personal nature."

Tuller says this is an attempt to shut down academic freedom to
criticise other researchers' work. Edwards, a former colleague of
Crawley's, told BuzzFeed News the letter "raises serious concerns
about the probity of the University of Bristol". Bristol said it
didn't feel it was appropriate to comment on this.

A freedom of information request by the TYMES Trust revealed that
Bristol didn't have any records of harassment against Crawley,
although the university stressed that it was aware of such harassment
and the lack of records simply reflected that it didn't have a process
for recording it.

In the years since their Lightning Process attendance, the patients
BuzzFeed spoke to have had very different experiences. "You leave
thinking, This is amazing, it's all been in my head," said Waterhouse.
"And I went back to living my life as much as I could. I'd have
another drink because they're telling me it's all in my head. I pushed
my body beyond where it should have gone.

"And I believe that has been detrimental to me still suffering from ME
nine years on, because the advice should be to pull everything back,
to rest."

McParland similarly says it led to a crash.
"You come home on this
high, and you do try and do things that you didn't normally do," she
said. "You do them for about one to two weeks, and then bang, back to
square one. Even worse, because you've done more than you ever did."

Exactly why it appears to work for some people but not others is
obviously not clear, but
one possibility that the patients raised is
that they actually had different conditions. McParland suggests that
there are people who are being misdiagnosed with CFS/ME, but who in fact have depression or anxiety, and that perhaps this explains why it has an effect in some people. Edwards agrees. "In my career looking at rheumatoid arthritis, you'd get a lot of people who thought they had it but didn't," he said. "But with conditions like rheumatoid
arthritis it's quite easy to tell who really has it. With ME you can't."


Peter Rowe, a professor of pediatrics at the John Hopkins University
School of Medicine in Baltimore, told BuzzFeed News it was
"preposterous" to suppose his CFS/ME patients could get better in
three days. He thinks the diagnostic criteria in the UK, under which
children can be diagnosed with CFS/ME if they've been ill for three
months, and adults for four, brings a lot of people with other
conditions – including depression, anxiety, and glandular fever –
under the umbrella of CFS/ME. In the US, diagnosis can't happen until
six months.

"Having seen people in a specialist clinic for the last 23 years," he
said, "I've never seen anyone who had true ME/CFS who could get better
in a weekend. It raises the question of what these folks had when they
report such a massive turnaround." He thinks that since a lot of
people with glandular fever get better spontaneously between three and
six months after falling ill, that might also partly explain the
phenomenon.


All the patients BuzzFeed News spoke to said the Lightning Process
treats CFS/ME as a mental illness, rather than a physical one. (Parker
denies this characterisation.)

The difference was that the two for whom it worked agreed it was a
mental illness. "I fundamentally believe that it is a psychological
condition," said Paul. "I know that's really controversial, but I
think that [the Lightning Process] has hit on something that it really
is like a pattern in your brain that keeps you feeling like your body
is constantly attacking itself, and you can flip a switch that stops
it doing that." Michael describes CFS/ME as a "physical manifestation
of a psychological illness".

But McParland, Waterhouse, and Jamie disagreed. "I'd have loved it if
it was a mental illness," said Waterhouse. "I'd have done the
Lightning Process for the rest of my life it had worked."

Parker said the Lightning Process has had success with many people who
have been sick for years, some of whom are tube-fed and bedridden. He
added that "one of the ironies is that the argument with chronic
fatigue is that people don't take the disease seriously, but the
moment people get well, suddenly people say 'well you didn't really
have it'."

Life for the patients who told BuzzFeed News they continue to have
symptoms after the Lightning Process is a struggle. McParland said her
"life ended at 44"; nearly two decades later, she still had to do
relaxation exercises before speaking to BuzzFeed News on the phone.
Jamie still struggles with fatigue and poor sleep and other problems.
"I've learned to function around them," he said, but he had to quit a
stressful job last year because the work was making him worse.

Waterhouse said her "whole life has changed" as a result of her
illness; she said she is still single because of it, and hasn't worked
for two years, since having a "massive crash" after trying to set up
her own business. Not only did the process not help her, she considers
it to be cruel.

"I just think it's really unfair," she said. "Telling people who have
a debilitating condition such as ME that it's all in our minds, and
that we should try harder. I'm the last person in the world who should
try harder. That's where it's totally wrong."

Saturday, December 30, 2017

Scrooging ME

http://occupyme.net/2016/12/27/a-myalgic-carol/

Friday, December 29, 2017

Professor Kristian Sommerfelt on cognitive challenges for children/adolescents with ME

 Professor Kristian Sommerfelt on cognitive challenges for children/adolescents with ME

https://youtu.be/UJbU4KRmQOw
Subtitles: English (press subtitles/closed captions)

---


https://www.s4me.info/index.php?threads/professor-kristian-sommerfelt-on-cognitive-challenges-for-children-adolescents-with-me.1713/

The Norwegian ME Association has interviewed neurologist and
paediatrician professor Kristian Sommerfelt about cognitive challenges
for children and adolescents with ME. He works at the children's ward
at Haukeland university hospital in Bergen, Norway.

He has long experience with children and adolescents with ME and has a
talent for describing ME in an understandable way. Very sympathetic
and knowledgable doctor who "gets it" when it comes to ME.

Prof. Sommerfelt often gives lectures about ME for patients, carers
and health personell in Norway. He also attended the panel debate
after Unrest's European premiere at the film festival CPH DOX in
Copenhagen.

In this video he talks about:

Cognitive challenges in general
Brain fog
When cognitive challenges are most apparent
How health personell can address it
Connections with other symptoms
How the ability to talk is affected
How the memory is affected
Achieving a good everyday life with ME


English subtitles for this interview were requested and are now provided.

Members of this forum gave great help with proofreading. Thank you!

Duration: 22 min. Language: Norwegian. Subtitles: English

https://youtu.be/UJbU4KRmQOw

Monday, December 18, 2017

Jen and "Unrest" on with Dr. Oz Today

Oz is finally admitting that it's real, not just depression.  He did a good demonstration of a battery that doesn't recharge.

He commented that when his show started it wasn't taken seriously, but the science is now showing that it is.  If only more doctors were willing to admit they were wrong.

Friday, December 8, 2017

Changes in Brain Chemistry After Exercise

ME Association:

We recently reported the results of research from Professor James
Baraniuk and Assistant Professor Narayan Shivapurkar of Georgetown
University in America.

The research demonstrated differences in the levels of small
molecules, called micro-RNAs, in the brains of people with chronic
fatigue syndrome (CFS) and Gulf War Illness (GWI), after exercise.

We are now able to provide a summary review of this important study,
to be read online or as a download.

#MECFS #Research #miRNA #PEM #Exercise

http://bit.ly/2nvNeOK
i.e.
http://www.meassociation.org.uk/2017/12/mea-summary-review-changes-in-brain-chemistry-after-exercise-in-cfs-gulf-war-illness-and-sedentary-controls-06-december-2017/

Tuesday, September 26, 2017

Through the Shadowlands available in audio

Through the Shadowlands available in audio
View this email in your browser


Dear Karen,


The audio version of my book, I knew, would be important. So many of my patient friends can't read an entire physical book, but they can listen. But I ran into trouble getting the audio version produced. So I decided to do it myself, with help from a recording engineer — and a team of volunteers from around the world, organized through #MEAction. I needed to make sure that I had read the text completely accurately, and the team carefully listened to the entire book, catching any problems. I'm enormously proud of the final product, and I'm so glad finally to be able to share the book with everyone in this community.

Sincerely,

Julie Rehmeyer
Check Out Julie's Audiobook
Editor's Note: Interested in becoming a volunteer with #MEAction? Our global impact is only possible through your participation. To get involved please visit:

Tuesday, September 19, 2017

Changing Hearts and Minds


Changing Hearts and Minds: A Review of Unrest



Five years in the making, the award winning film Unrest whichJen Brea
created to portray the real costs and struggles ME/CFS patients face,
is finally here. With showtimes starting next week, now is the time to
see and spread the news regarding this raw, poignant and powerful look
at ME/CFS.

Check out a review of Unrest and find out how you can see it in

http://bit.ly/2fggLbM
i.e.
https://www.healthrising.org/forums/threads/changing-hearts-and-minds-a-review-of-unrest.5591

Things to Do When You’re Mostly Housebound

"Things to Do When You're Mostly Housebound

For those who are mostly housebound, living well can be a challenge."

by
Toni Bernhard J.D.

(August 09, 2017)

http://bit.ly/2yfEzBh
i.e.
https://www.psychologytoday.com/blog/turning-straw-gold/201708/things-do-when-you-re-mostly-housebound

From "Sick" to "Disabled"

From "sick" to "disabled": my own journey

Posted on June 13, 2017
Author Catherine Hale

Catherine Hale looks back at how half a lifetime of chronic illness
slowly changed her understanding of "disability".

-----

She has a chronic illness [ME].

She discusses wondering how the "social model of disability" related
to her. She discusses how her mindset has changed somewhat over the
years.

"How much was my own recovery-obsessed mindset holding me back from
demanding that society accept and include me just as I am?"

http://bit.ly/2wqJgpO
i.e.
http://inclusionproject.org.uk/social-model/from-sick-to-disabled-a-personal-journey/
* * *
I can tell you that it took a long time for me to accept that I was disabled.  Too many outside forces insisting that if I just tried harder, looked again for a doctor with the right magic pills, I'd be well again.  As if admitting that I'm disabled was somehow a failure instead of accepting reality.
 
I finally was sent to a consulting doctor who made it clear that the years of bad doctoring, ignoring physical symptoms and treating me for psych problems that I didn't have, refusing to give me either pain pills or sleeping pills so that I could get more than an hour or two of sleep before the pain woke me up, at best I might work half-time, but the physical damage from that medical neglect was permanent and too severe to ever return to full-time work.  That was what shook me up enough to recognize I was permanently disabled.
 
 
 
 

Coins for a Cure

From: Open Medicine Foundation

https://www.omf.ngo/coins-for-a-cure/

Coins For A Cure was inspired by one patient's hope for a cure. Eimear
Forde's family has been going door-to-door and all around her town in
Ireland collecting donations to support OMF"s research. Together with
her children, they share the message of hope by using a basket of
"Hope."

One of Eimear's friends came to her home and emptied an entire piggy
bank full of coins into her collection bucket. It was a lot of coins
and totaled up to 50 Euros. This inspired Eimear and her family to
start collecting coins from family, friends, neighbors and local
businesses. In their first "Coins For A Cure" collection, Eimear
donated over $600 USD. Eimear said, "Some of the donations are small
but it all adds up!! We have to find some solutions to this awful
disease, I want to do all I can to help."

We invite you to join Eimear and ask your family and friends to donate
their spare change and to empty their piggy banks. Invite local
businesses to put a collection jar by their registers. You can get
your company, group, church or organization involved too. Let's make
this an international Team OMF collaborative effort. Join the action
and get your community involved.

Millions of patients around the world are in need of a treatment and a
cure. Your coins are truly giving hope to patients and their families,
just like Eimear's. Be a part of Coins For A Cure and help accelerate
research to help millions of patients.

Donate Now
https://app.etapestry.com/onlineforms/OMF/CoinsforaCure.html

Please share our Coins For A Cure campaign with your friends.
Working together, we will find answers!

Saturday, September 9, 2017

Tuesday, July 18, 2017

National Disability Voter Registration Week: July 17-21

No matter whether you have private insurance, Medicare or Medicaid, they're talking about changes that will affect your healthcare.  Make sure you're registered now, and make sure you vote next November.
 


Graphic of Register! Educate! Vote! Use Your Power! Rev Up for California! Make the Disability Vote Count.

Support National Disability
Voter Registration Week

July 17-21, 2017

In collaboration with the American Association of People with Disabilities' Rev Up campaign, the Disability Organizing Network supports National Disability Voter Registration Week. Building the disability vote is essential. Together we can make a difference by continue to organize and educate people with disabilities about the importance of voting.
There are a variety of ways to participate in National Disability Voter Registration Week.
Are you registered to vote? Did you know that California Residences can register to vote online? Visit the California Secretary of State website to register and share the link with your friends, colleagues and network:
Use your social media accounts to post and show your support by sharing a Rev Up graphics:
Sign onto the Rev Up Support Statement and ask others to do the same:
Contact your local Independent Living Center Community Organizer to ask how you can get involved in the Systems Change work happening in your community:


Tuesday, June 27, 2017

Disabled writers

A friend who works with the disabled passes along this link:
 
What an excellent idea! Writers with a disability have created a brand-new website, Disabled Writers. The aim of the site is to enable editors to connect with disabled writers (and vice versa).
https://www.disabledwriters.com/
 
Thanks, Dan!

Thursday, June 15, 2017

Carers Week

It's Carers Week, and we're supposed to acknowledge those who have cared for us during our illness.
I would like to acknowledge my carer: Me.
My ex would leave me alone for 18 hours at a time so he wouldn't have to provide care – no matter how many times I reminded him, he wouldn't even leave a sandwich and a pitcher of water next to the bed for me (and then he wonders why he's an ex!). When I was deathly ill, organs beginning to shut down, I wanted to go home to die, and my mother reminded me that growing up I had been told that I was out as soon as I graduated; she wasn't going to take care of me, either, even though I didn't really need nursing, I just needed someone to cook meals (which she was already doing for herself and Dad).
I tried hiring people, but they only wanted to do what they wanted to do; a man was happy to drive me wherever I wanted to go, but cooking and cleaning and caregiving were "women's work" and he was not willing to do that. A woman who claimed that she had been paid caregiver for a woman with Alzheimer's had a very different idea of what the job entailed than I did; it turned out that she was merely the daytime babysitter while the family went to work – the patient's daughter did all the cooking and cleaning, so all she was required to do was make sure the patient didn't burn down the house and periodically coax the patient to go potty. She thought it was outrageous that I expected her to make meals for me and claimed not to know how to load a dishwasher, even after I'd showed her how, much less doing any of the other chores. She thought the job was merely sitting on the couch reading a book or watching TV, not actual work.
I wrote a blog post years ago pointing out that the books about living with CFS are written by those who have family caring for them, not those who are using every ounce of energy to buy and prepare food, and thus give a very different impression of how tough it is.
The story would sound much more heartbreaking with tales of "I haven't eaten in a week because I cannot get out of bed to get to the kitchen" than it does with "I wasn't feeling well, so my daughter made me a lovely homemade chicken soup." Or "I don't recall the last time I bathed because I don't have the energy to get to the bathroom" versus "my husband drew my bath, carried me to the tub, gently washed me, and carried me back to bed."
When I'm up to it, I will hardboil a dozen eggs, and I keep cooked shrimp in the freezer in single-serve packets, only takes a couple minutes to pull out two eggs and a baggie of shrimp for a high-protein lunch.
The problem is the days that I can't get out of bed without falling to the floor. Eventually I realized that I could stack several cases of bottled water and nutrition shakes next to the bed, and keep things like PopTarts and cereal bars on the bedside table for the days that I couldn't make it to the kitchen. Or make PBJ sandwiches.
Then someone mentioned taking her lunch to work in a mini-crockpot; takes 45 minutes to an hour to heat leftovers (or a can of something). For $20 I got one to keep next to the bed with a variety of canned goods, so now I can eat soup, stew, vegetables, etc., not just cereal bars, when I'm not able to get to the kitchen. A can of chicken and a can of carrots, plus the liquid from each, and part of a bottled water, and I have chicken soup. If I line the container with foil, I don't have to use my precious bottled water to wash it between meals.
I have experimented with other options, some more successful than others. I can put eggs in and leave them for a couple hours to get hardboiled (because the water never gets to boiling, so you have to cook them longer), but trying to make an omelette was not as successful. Meat needs to be pre-cooked, since this mini-crockpot is intended to reheat, not cook; but you can use canned chicken or thick-sliced roast beef from the deli counter.
If you are making something really dense like couscous, heat the water first, or else the center will be cold. Instant rice works better than regular.
Last week I attempted casserole. Heat the water, then put in the dry noodles, canned tuna, and veggies for a few minutes until the noodles were done. Not bad.
Of course, all my cooking creativity doesn't solve the problem of getting the house cleaned or the trash taken out, but it solves the immediate problem of getting enough nutrition to stay alive. I can take out the trash on a good day.

Thursday, June 1, 2017

Hashtag Advocacy

Hi everyone, 
Save My Care is launching our effort to elevate the #IAmAPreExistingCondition hashtag today Thursday, June 1, 2017. The goal is to put faces, names, and stories to the 1 in 6 people who may lose access to affordable health coverage under the GOP's American Health Care Act (AHCA). We'll be asking people to post photos of themselves on the hashtag holding a sign that includes their preexisting conditions, or the preexisting conditions they are concerned about.
There are a few ways you and your organization can participate:
Onward,

Ted

Wednesday, May 24, 2017

ME and enterovirus

Dr. Hyde suggests that if the polio vaccine engineered decades ago had covered a few more enteroviral strains "M.E." would not exist
 
 
* * *
Pretty much what Dr. Bruno said, too -- the polio vaccine covers the top three strains, and ME is the #4 most-damaging one.
 
 

Wednesday, May 17, 2017

Write about your bad experience

You and Me Magazine will pay $125 for your first-person essay about your experiences as a patient
 
 
 

Write about your bad experience

You and Me Magazine will pay $150 for your first-person essay about your experiences as a patient

Friday, May 12, 2017

"Happy" ME/CFS Awareness Day

Once again, it's May 12, time to bang our heads against the wall trying to convince the world that CFS is not just depression or laziness.
 
Once again, it's May 12, time to cross off another year of living without a cure -- if you can call what we do "living" ... it's merely existing, taking up space, using oxygen, wishing that we could do something productive.
 
But this year there's some hope -- you can donate here Registration to fund mitochondrial research into CFS.  Mitochondrial dysfunction is why we're constantly tired.  They're finally looking into something useful instead of wasting research money on psychiatric explanations that do nothing to help us.
 
This is my 30th year of being sick.  I'd like to see 30 people donate in honor of my wasted life.  We are (of course) Team CFS.
 
 

Wednesday, May 10, 2017

Donate for CFS Research

 
DONATE FOR RESEARCH: https://act.ucsd.edu/mitowalkandroll5k/add  -- we are Team CFS Facts
 
Scroll down past the walk registration lines on the form and there's a line for additional donation. 

Tuesday, May 2, 2017

ME Awareness Month -- California Legislature

 

Action Alert! California residents call your state Senator today and ask them to support SCR-40 Myalgic Encephalomyelitis Awareness Month. We are heading for a vote in 10 days and need their support. Use our easy step-by-step guide here: http://bit.ly/2oR9iUm

 

Saturday, April 29, 2017

Fundraiser and 5K Tropical Run for mitochondrial disease May 20 - T

 
Fundraiser for research into the mitochondrial component of CFS.
 
Team CFS Facts should be listed shortly if it's not there already. 

Wednesday, March 22, 2017

A Biomarker for Chronic Fatigue Syndrome (ME/CFS)? Immunosignature

 
"It suggested that some sort of core immune reaction was taking place in ME/CFS."

Sign the Petition to keep long-term care

 
Repealing the ACA and slashing Medicaid would leave millions of families unable to afford in-home care.

This plan will make it harder for millions of Americans to afford long-term care -- whether at home or in a nursing home -- and eliminate incentives to keep that care high-quality and community-based. It puts everyone who needs care at risk.

Sunday, March 19, 2017

Getting It Wrong on Chronic Fatigue Syndrome - The New York Times

 
by Julie Rehmeyer and David Tuller
 
Critiquing the PACE trial,
 
"According to a 2015 report from the Institute of Medicine, now the National Academy of Medicine, even minimal activity can cause patients prolonged exhaustion, muscle pain, cognitive problems and more." 

Tuesday, February 14, 2017

30 Years -- Pearl Anniversary

Today marks two important dates – it's exactly 30 years since I got sick, and it's approximately the day I officially cross over into "living on borrowed time".  The day that I reach average life expectancy with this damn disease.
 
And in that 30 years, there has been no treatment found, no cure discovered.  The situation hasn't improved one iota.  Why?  Because the guys in DC who suffer from male pattern baldness give more research money to that than they do to this disease that actually makes life a living hell.  I wish I were joking about that statistic, but I'm not.
 
I've been sick over half my life and there's still not a damn thing they can do to make my life any better.  I can't even get charity help because I have the wrong diagnosis.
 
And then people wonder why I lost my essential optimism?  You can't wake up every day for 30 years saying hopefully "today is the day they're going to find a cure!" and go to bed every night, sighing "not today", without realizing that thinking positive is useless.  It doesn't matter how much I follow the instructions to think positively; if the necessary research isn't being funded, they're not going to find the cure.  It doesn't matter how much I think positively that "today is the day that some friend will get an attack of guilt and offer to help" when 30 years of patiently waiting for my friends to mature enough to think of someone other than themselves has produced zero results.
 
And what little money is allocated to research is often wasted looking into things that have nothing to do with this disease or have already been disproved.  That 105 fever was not psychosomatic.  That blood test 10x normal proves it's not depression.  But, like every disease that affects more women than men, male doctors find it easier to write it off to psychiatric reasons than to figure out what's causing the problem.
 
 

Monday, January 23, 2017

Woo won't cure this

For all of you who've fielded "helpful hints" from uninformed people....

http://modernliberals.com/your-internet-woo-not-cure-medical-problem/

I especially love the arguments from people who insist that something that didn't work for you when you tried it already will work now because this time THEY are the one who suggested it.  Or that it didn't work because you used a reputable, clean American brand, instead of the herbs they're pushing that are imported from a Third World country with no oversight or guarantee of purity.