Tuesday, 29 December 2015

Are Chronic Fatigue Syndrome and Fibromyalgia Related to Parkinson's Disease?

Combining a Parkinson’s drug called L-dopa with a non-steroidal anti-inflammatory drug completely eliminated any signs that an animal model was feeling pain. A clinical trial in humans is underway.

Are Chronic Fatigue Syndrome and Fibromyalgia Related to Parkinson's Disease?

Saturday, 26 December 2015

Ian Lipkin: Three to Five Years* to Solve Chronic Fatigue Syndrome (ME/CFS)

Ian Lipkin flew to Lake Tahoe this December to fundraise for work he’s doing with the Simmaron Research Foundation. In a talk covering his virus hunting career, the threat of pathogens to humanity, and his work with chronic fatigue syndrome (ME/CFS), he dropped a bombshell: he stated that he believes it’s possible to solve ME/CFS in three to five years.

Ian Lipkin: Three to Five Years* to Solve Chronic Fatigue Syndrome (ME/CFS)

Thursday, 24 December 2015

Just when you think it can't get worse, more shocking PACE trial revelations‏

From Margaret Williams : further details about PACE Trial data security. Permission to repost.

"Two points merit further consideration: (i) the matter of guaranteed confidential storage of PACE trial data and (ii) the Principal Investigators’ undeclared conflict of interest until after the consent forms were signed by participants.

The PACE trial Protocol published in BMC Neurology on 8 March 2007 was an abridged version
but, as noted by Alem Matthees, the Full Protocol (226 pages) states on page 110:
“Your GP and any other doctors you are consulting will be told you are joining our study. And occasionally, other researchers will need to see your notes so they can audit the quality of our work. An audit might be run by one of the universities helping with our study or hospital regulatory authorities, or by one of the organisations funding our study”

What Matthees did not mention was the fact that one of the organisations funding the study was the UK Department for Work and Pensions (DWP). How many participants looked at the funding bodies before signing the consent forms and realising to what they were giving their consent?
Quite how “confidentiality” could be guaranteed if the DWP had access to the data has never been explained, especially as ME/CFS is known to be a targeted disorder for the withdrawal of state benefits, with patients being harassed by the DWP who required a 60-page form to be completed because the DWP menacingly informed such patients: “We have reason to believe that you are capable of work”.
If the PACE trial therapists and Investigators deemed a participant “recovered” enough to resume work, then might that participant quickly discover that the DWP stopped paying benefit? The PACE Trial has been described as a “Trojan horse” for the DWP.
Regarding the secure storage of data, the Full Protocol is unambiguous:
“Will you keep my details confidential?”
“Yes. All your details and all recordings will be kept strictly confidential and held in a locked filing cabinet or on a secure computer. People on our research team will only see your records if they need to for the research”.
The DWP was not involved in research but still had participants’ signed permission to access their records/data.

From the outset, recordings were not kept in a locked filing cabinet: some were stolen and thus lost to review (see previous post on 19th December 2015:

The Consent Form 1 for baseline assessment which participants were required to sign was clear:

“3. I understand that any of my medical notes may be looked at by responsible individuals from either the trial or regulatory authorities where it is relevant to my taking part in research.

4. I give permission for these individuals to have access to my records.

14. I understand that information collected about me for the trial, including my personal details, a copy of this consent form and all of the questionnaires I complete for the trial, will be held securely by the local trial staff and at the PACE trial centre at Queen Mary, University of London. I give permission for this to happen”.
The PACE PIs obtained participants’ consent on the promise of keeping trial data secure, yet they had made no provision to do any such thing.
When the PACE Trial had been running for two years, the Participants’ newsletter (Issue 1, June 2006) reaffirmed that the trial data was safe: “The information is being entered onto a large and secure database, designed and maintained by an independent clinical trial unit at King’s College, London”. This was provided for participants even though the PIs knew that trial data had already been stolen (see previous post #‎comment

In relation to the PIs’ undeclared conflict of interest, one of the pre-trial assessments was at Baseline Visit 1; this set out to collect personal data that seems to have little bearing on a clinical trial but could be of value to the DWP and the permanent health insurance industry because the collected data included not only the customary demographic details, date of birth, age, sex, ethnicity, marital or partner status, years of education, occupation (the latter would obviously afford information about a participant’s earnings) but also very detailed questions about participants’ permanent health insurance payments, for example, questions on page 172 ff of the Full Protocol included the following:
“Do you currently receive income protection benefit (income protection or total and permanent disability)?”
“ If yes, how much annually do you receive? £”
“If the participant chooses not to give an answer, please use the prompt card to show income brackets, and record the letter [an alphabetical letter designating an income bracket] that corresponds to the participant's income”.

“Do you currently receive a private medical / retirement pension?”
“If yes, how much weekly do you receive? £
If yes, how much monthly do you receive? £
If yes, how much annually do you receive? £”

“If the participant chooses not to give an answer, please use the prompt card to show income brackets, and record the (alphabetical) letter that corresponds to the participant's income”.

“In the past six months, have you received any one-off payments from income protection or insurance schemes as a result of your health?”

Such specific questions have no clinical relevance but would be of interest to the Chief PI of the PACE trial in his dual role as the re-insurer Swiss Re’s Chief Medical Officer.
As detailed by David Tuller, participants could not give fully informed consent because the PIs’ Iong-standing involvement with the permanent health insurance industry was never disclosed to them. Indeed, it appears that this significant conflict of interest was not initially disclosed even to the Trial Steering Committee: at the meeting on 22nd April 2004, all members present were asked to declare any conflict of interest. It was minuted that no financial conflicts of interest were declared and it was agreed that no-one present had any other substantial or material conflict relevant to their work on the PACE Trial. Amongst those present were Professors Peter White, Michael Sharpe and Trudie Chalder, all of whom worked for the permanent insurance industry. There was a brief mention of paid consultancy work done by the PIs in the BMC Neurology version of the Protocol, which was long after signed consent forms had been obtained."


Wednesday, 23 December 2015

Ending chronic pain with new drug therapy

A brain region controlling whether we feel happy or sad, as well as addiction, is remodeled by chronic pain, reports a new study. And in a significant breakthrough, scientists have developed a new treatment that restores this region and dramatically lessens pain symptoms in an animal model. The new treatment combines two FDA-approved drugs: a Parkinson's drug, L-dopa, and a non-steroidal anti-inflammatory drug. These drugs target affected brain circuits and completely eliminate chronic pain behavior. 

Ending chronic pain with new drug therapy

Tuesday, 22 December 2015

“Vexatious”: King’s College London dismisses James Coyne’s request for PLOS One PACE data

Response from the academic community has been swift and condemnatory and is growing. Prominent bloggers Retraction Watch wrote,
“King’s College London doesn’t want to release data to James Coyne from
a study of chronic fatigue syndrome. See if the absurd reasons make
your blood boil as much as ours”. 

“Vexatious”: King’s College London dismisses James Coyne’s request for PLOS One PACE data

Study shows Epstein-Barr virus can infect human neurons

A new study has found that two human herpesviruses: Epstein-Barr virus (EBV) and Kaposi’s sarcoma-associated herpesvirus (KSHV), previously only proven to infect B cells, can also infect neurons.

For years there has been indirect evidence that gammaherpesviruses
like EBV and KSHV could infect nervous tissue. For example, EBV viruses
have been found in the cerebrospinal fluid and brain tissue of patients
with Alzheimer’s multiple sclerosis. EBV has also been tied to an
increased risk of developing MS.

Researchers tagged EBV and KSHV with green fluorescent protein (GFP)
and observed them infecting neuroblastoma cells (neurons derived from a
cancer cell line) in vitro. These findings offer further
evidence that these viruses may be associated with the neurological
pathologies involved in these diseases.

The researchers also found that acyclovir was effective at inhibiting the production of virus from neuronal cells.

EBV has also been associated with an increased risk of Chronic Fatigue Syndrome.

Study shows Epstein-Barr virus can infect human neurons

Busted! Exercise Study Finds Energy Production System is Broken in Chronic Fatigue Syndrome

To reiterate the CPET maximal exercise test-retest 

  • smashes the deconditioning argument to bits
  • provides a metabolic basis for the exertion problems in ME/CFS
  • relies on commonly used
    equipment that has been used to  validate dysfunction  in many disorders
    (unlike much cutting-edge research in ME/CFS).
  • provides the best evidence for disability possible
  • appears to identify a core issue that many people with ME/CFS, young and old, highly disabled and more functional share
  • can differentiate between 
    people with ME/CFS who have metabolic issues and  people who are equally
    low functioning but don’t have them.  Thus its an excellent way to
    subset patients prior to studies
This study  provides further
validation that something has gone very wrong in ME/CFS patients energy
production pathway.  In my opinion if anything deserves more study in
ME/CFS…it’s this…

Busted! Exercise Study Finds Energy Production System is Broken in Chronic Fatigue Syndrome

Care Act 2014: Information gap 'denying' people sufficient choice and control over care

Local authorities are denying people sufficient “choice and control”
over the care and support they receive under the Care Act 2014,
according to research published last week.

A review of Care Act materials
produced by local authorities found that councils “generally” failed to
give people adequate information about their rights to different care
options locally. The situation left people unable to exercise sufficient
choice and control over their care, despite this being a core principle
of the act itself, researchers found.

Care Act 2014: Information gap 'denying' people sufficient choice and control over care

Mourning The Loss of The Former Self When Chronically Ill

When one becomes chronically ill there are many emotional and behavioral changes that have to be made in order to properly cope with dealing with the symptoms, limitations, and loss associated with becoming ill. Today we are going to talk about the loss of the former self and how to continue to live life fully despite your numerous daily challenges when chronically ill.

Mourning The Loss of The Former Self When Chronically Ill

20 Helpful Tips for Cleaning and Organizing When You’re Chronically Ill

One of the most important things I've learned about fibromyalgia, ME/CFS and Lyme is there is a wide spectrum of disability among our patient groups. Some of us lead pretty normal lives in spite of the pain, fatigue and other symptoms, and some of us have symptoms so severe that we can't get out of the bed, much less clean a toilet. Given that spectrum, it's impossible to come up with tips that apply to everyone. So, in reading these, I ask that you apply the tips you can use based on your abilities and ignore the rest.

20 Helpful Tips for Cleaning and Organizing When You’re Chronically Ill

Gammaherpesvirus Infection of Human Neuronal Cells

Gammaherpesviruses human herpesvirus 4 (HHV4) and HHV8 are two prominent
members of the herpesvirus family associated with
a number of human cancers. HHV4, also known as
Epstein-Barr virus (EBV), a ubiquitous gammaherpesvirus prevalent in 90
95% of the human population, is clinically
associated with various neurological diseases such as primary central
nervous system
lymphoma, multiple sclerosis, Alzheimer’s
disease, cerebellar ataxia, and encephalitis. However, the possibility
that EBV
and Kaposi’s sarcoma-associated herpesvirus
(KSHV) can directly infect neurons has been largely overlooked.

Gammaherpesvirus Infection of Human Neuronal Cells

How corporates co-opted the art of mindfulness to make us bear the unbearable

Pasteurised versions of the ancient practice of mindfulness are now big business. With Google, Target and Ford recently jumping on the corporate mindfulness bandwagon, the rebranding of mindful meditation and practice as a means to increase both productivity and compliance is now complete.

Slowing down, tuning in and radical acceptance have been molded into low-cost tools to increase our ability to speed up, tune out and drive ourselves harder than ever before.

How corporates co-opted the art of mindfulness to make us bear the unbearable

Exercise Triggers Gut Changes in Chronic Fatigue Syndrome (ME/CFS)

Much more clearly needs to be done. This study was too small to be able to pluck out individual species or to assess the abundance of groups of rarer phyla. It was a pilot study; a preliminary look at the effects of exercise on the guts of ME/CFS patients, but it did suggest that something different is happening and that something is showing up in their blood as well. Hopefully it will translate into a larger study or studies.

In the meantime you can add the gut to a growing list of systems (cardiovascular, immune, nervous system) studies indicate are effected by exercise in ME/CFS.

Exercise Triggers Gut Changes in Chronic Fatigue Syndrome (ME/CFS)

Thursday, 17 December 2015

The politics of stigma with ME/CFS

Last month my “shocking” report with Action for ME, Close to Collapse was released, showing the massive failure of the UK social care system to meet the needs of people with the chronic illness ME (otherwise known by the dreadful term Chronic Fatigue Syndrome)

For anyone new to M.E., forget the implication that we’re just “tired all the time”. ME is extremely debilitating, both physically and mentally. In fact, research shows the ME patient population has lower scores for physical function and quality of life of any chronic disease group.

So 97% of the 850 people with ME who took my survey needed help with 2 or more activities of daily living like going to the toilet, dressing or getting to a local shop. In terms of the Care Act, this means they met the main threshold of eligibility for social care in England.

Yet only 6% were receiving a social care package. 

The politics of stigma with ME/CFS

Wednesday, 16 December 2015

DWP Aims To Slash Number Of PIP Awards by 35% - People Who Rely On Aids Main Target - Vouchers May Replace Cash

In this edition we reveal that the DWP is planning to make it much harder for claimants who need aids and adaptations to get an award of PIP. As many as 35% of claimants who currently get an award of the daily living component could miss out in the future.

The move by the DWP is partly due to the fact that claimants are winning a shocking 6 out of 10 PIP appeals, the latest figures show.

Also in this edition, we have news that ESA reassessments have begun again after a break of almost two years.

16 December 2015 newsletter

Three and a half stone loss

An early Christmas present to myself - I so wanted to get this before Christmas, and did!

Wednesday, 9 December 2015

Benefit assessments are making society more hostile towards the invisibly disabled

The issue isn’t that we should treat people with disabilities
differently. A person is a person regardless of their health. However,
the current political climate appears to encourage prejudice and
distrust against those who are not visibly disabled. Instead, many
people are living in a constant state of fear, of being called out for
being a fraud, of verbal and physical abuse, and of a benefits system
that does not understand so many conditions, and seems to ignore
personal testimony when it is given.

Benefit assessments are making society more hostile towards the invisibly disabled

Monday, 7 December 2015

It’s time for doctors to apologise to their ME patients

The argument here is not with mental illness, which is just as real and horrible as physical illness. As with any long-term illness, some people will develop mental health problems where talking therapies can clearly be of help.

The argument is with a simplistic and seriously flawed model of causation that patients know is wrong and which has seriously delayed progress in understanding the underlying cause of ME and developing effective forms of treatment.

Opening the 2015 research collaborative section of neuropathology, Jose Montoya, professor of medicine at the University of Stanford, said: “I have a wish and a dream that medical and scientific societies will apologise to their ME patients." 

It’s time for doctors to apologise to their ME patients

Study proposes new name, definition and biomarkers

New case definition and biomarkers suggested from Australia’s Deakin University: Neuro-Inflammatory and Oxidative Fatigue

An Australian university is suggesting a new name to replace ME/CFS. The new name is Neuro-Inflammatory and Oxidative Fatigue or NIOF, after they studied 196 subjects with CFS (CDC criteria) and 83 with chronic fatigue and found two distinct groups.

Study proposes new name, definition and biomarker

Debunking the myth of the militant minority

In the British media, ME activists who have opposed cognitive behavioral therapy (CBT) and graded exercise therapy (GET) are often been portrayed as an unreasonable, militant “minority.”

Members of the #MEAction Science and Treatment Policy and Media Working Groups have drafted this fact sheet to explain the real reasons why ME patients are opposed to CBT and GET. It’s not that we fear the stigma of mental illness. It’s that these treatments are ineffective and may actually make us worse. That view is held by more than 10,000 people around the world.

Whenever you see a journalist or someone on social media repeating these myths, you can share with them this sheet: “Why ME patients are critical of the PACE trial.”

Debunking the myth of the militant minority | #MEAction

Friday, 4 December 2015

Flatulence is the sign of a healthy diet

It's a problem common to all weightloss endeavours, but will be all the more familiar to you if you've followed a Slimming World plan. Of course it has it's disadvantages, but it's really useful to know that it's a good sign.

Thursday, 3 December 2015

International Day of Persons with Disabilities, 3 December 2015

Today, 3rd December, is the not-so-catchy entitled International Day of Persons with Disabilities, I have been informed. "The observance of the day aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities. It also seeks to increase awareness of gains to be derived from the integration of persons with disabilities in every aspect of political, social, economic and cultural life", says its Wikipedia entry.

Sadly, in the UK at the moment, we're really in need of help and support and none more so than those of us with invisible disabilities, who are so often maligned and misunderstood. 

Therefore, I was pleased to learn that one of the three sub-themes, decided by the UN for this year is, 'Including persons with invisible disabilities in society and development'. And I've been given access to the following infographic - I'm only posting part of it, the whole infographic can be seen here - that was created in the hope of raising awareness of Invisible Disabilities and explores some of the most common Invisible Disabilities in the UK (including CFS).

You can also read more about what the UN is discussing here:  

New Forest Model Railway Society Open Day 2015

On Sunday, 29th November, we went to have a look at the New Forest Model Railway Society Open Day at Brockenhurst Village Hall, an exhibition we'd missed last year.

A few years ago, when I was still living in Spain and I'd decided to let go of all my OO guage rolling stock and buildings, I had donated them to the New Forest Model Railway Society, simply because I'd gone to their exhibitions and open days with my dad, goodness knows how many years ago (more than I want to count anyway) and it was my way of giving back.

Having done so, sadly, doesn't get me free entry today (joke), but I was glad to see that some of those buildings were being put to good use. They could, of course, have acquired the very same kits from elsewhere, but I had most of those low relief kits pictured above (excluding the station) and those were amongst the ones I had donated, so I assume that the ones you're seeing are the very ones my dad built when I was still a kid. They could be 50 years old.

There was not much N Gauge at this open day.

One layout with a lighthouse in the corner made me want this one from Langley Models even more than I already did. We may even have a suitable place on the harbour for it, I think, but it's one element that I'll be happy to wait and see on.

One thing we really want to avoid is trying to squeeze every feature - no matter how cute - into the Porthkeres layout. Even if we are going to model a fictional location, it must try to be a believable one. The other thing we were reminded in relation to this, is the importance of a varied topography. Not only does it add interest to a layout, we don't typically have totally flat landscapes in real life. We'll try to make our fictional Cornish landscape as bumpy and abrupt as the real one.

Wednesday, 2 December 2015

DLA To PIP To Take A Year Longer But One Quarter Still Expected To Get No Award

The DWP is now losing battles on all fronts, as the last fortnight has proved repeatedly.

Because whilst the big benefits news has been George Osborne’s massive u-turn over tax credits, there have been a host of smaller reverses for the DWP.

The forced transfer from DLA to PIP is already running into serious delays – though there has been no change so far in the estimate that a quarter of current working age DLA claimants will get no award of PIP; Maximus is failing to carry out enough work capability assessments, because not enough health professionals want to work for them, and support group numbers are rising as a result; the courts have ruled against the benefits cap for carers and mandatory work schemes are being axed as more and more big companies and charities bow to activist pressure.

On top of all that, Ken Loach is making a film about benefits sanctions. He says that the situation is now even worse than when he made ‘Cathy come home’.

2 December 2015 newsletter

HIV/AIDS drugs interfere with brain's 'Insulation'

In one doctor's, Theodore Henderson, MD., PhD, experience, over 85% of patients with SEID (diagnosed by Fukuda criteria) respond to antiviral therapy, these data are also consistent with prior studies of antiviral treatment of SEID and there are other studies and trials ongoing.

Antiviral therapy may therefore give hope to the general community of ME/CFS/Fibromyalgia patients that this may offer an effective treatment.

Unless you're in the UK, of course, where the NICE Guidelines insist that Antiviral agents should not be used for the treatment of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

It never ceases to amaze (and anger) me that when these "guidelines" provide a GP with a "getout", such as in this case, they suddenly become rules set in stone that cannot be disobeyed. On the other hand, when I attempted to get assistance with weightloss - and clearly came within the parameters recommended by the "guidelines" for treatment - they reverted to being mere guidelines and a reason was repeatedly found for witholding the help. In other words, the guideline to not use antiviral agents will be adhered to here like a prohibition issued under pain of death.

All that notwithstanding, I still believe that a) antivirals may help with my Epstein Barr onset ME (also maybe not after 42 years, but still worth a try), however, we should not be too eager to see them as an absolutely certain magic bullet and this may be one of the reasons why:

Antiretroviral therapies, or ART, have enabled people with HIV and AIDS to live much longer lives, transforming what was considered a death sentence into a chronic condition. Yet concerns for these patients remain. Up to half of people with HIV on these drug regimens have some sort of cognitive impairment, such as memory loss or problems with executive functioning, despite the virus being almost undetectable in their bodies.

HIV/AIDS drugs interfere with brain's 'Insulation' -- ScienceDaily

(Systemic exertion intolerance disease (SEID) is another name for what most of us still call Myalgic Encephalomyelitis (M.E.)

Mitochondrial Dysfunction, Post-Exertional Malaise and CFS/ME

Mitochondria cell
Those who have mitochondrial dysfunction of the skeletal muscle can experience two main types of fatigue. One is the result of increased acidosis inside the muscle cells and has as a marker increased lactate in the blood. This is a result of muscle cells trying to create ATP when there is insufficient oxygen. Endurance athletes (such as marathoners) can experience this type of fatigue. They refer to it as “hitting the wall." It is also referred to as “metabolic fatigue.”

The second type of fatigue is the result of a large build-up of Reactive Oxygen Species (ROS) and depletion of ATP in the muscle cells. As far as we can determine from a careful search of the medical literature, this second type of fatigue is unique to patients with known inherited genetic mitochondrial diseases of skeletal muscle, AIDS patients undergoing treatment with antiretroviral drugs (who have severe mitochondrial dysfunction), and CFS/ME patients experiencing post-exertional “malaise.” It is this second type of fatigue that has the most permanent serious consequences for patients.

Mitochondrial Dysfunction, Post-Exertional Malaise and CFS/ME


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