Why should home care be the theme on Understanding and Remembrance Day for Severe ME on August 8? Helen Brownlie of the 25% ME Group has written an explanation for Phoenix Rising …
August 8, 2015, will be the third annual Understanding and Remembrance Day for Severe ME. To mark this, the 25% ME Group — a support organisation for people who have severe myalgic encephalomyelitis — are focusing on care. We’ve done this in view of the truly dreadful service responses that our members increasingly report encountering here in the UK.
Clearly there’s a major gap between the care needs of people with severe ME and professional perception.… Read More
by Cort Johnson
It’s no fun when your ‘gas tank’ is empty. In fact it’s crazy how many of us are running on fumes on so many levels…personally, medically, financially…How nice it would be, out of the blue, to have a little fill up once in a while.
With the winners of the contest riding away with a cool $5,000 in Citgo gas cards, the Citgo Refueling Contest provides a chance, literally, to fill chronic fatigue syndrome patients’ gas tanks. I was a lucky recipient of one of those cards from a past winner and I can tell you it made a big difference during a difficult month financially.… Read More
In the next five hours NIDA will either win 20K or 10K
We can’t thank you enough for the support you’ve given Phoenix Rising. In one day we’ve rocketed up to 136th from 179th – a rise we suspect is rather unprecedented :). We’re tremendously honored by your support.
The big concern now is keeping the Neuro Immune Disease Alliance (NIDA) in the $20,000 category. NIDA needs to be in the top 96 to win $20,000 and right now with they’re at 87th and things could go either way in what is easily the busiest day of the contest.
NIDA is the brainchild of two parents, Linda and Don Tannenbaum, whose daughter fell suddenly ill with ME/CFS when she was sixteen. … Read More
(Things are finally starting to move…The FDA is responding but no meeting dates are set. Stop now and we risk losing our chance; keep working and we can bust this thing wide open. We are on the brink of getting a historic meeting at the FDA…
The FDA can be very pro-active in the drug approval process – we’re simply asking that they be pro-active with the only major disorder they’ve never approved a drug for. – ME/CFS! Let’s keep the pressure on by emailing the feds every day until the 25th….Cort.)
To All who took ACTION requesting THE FDA TO HOLD A STAKEHOLDERS MEETING for ME/CFS.… Read More
Reno (the Littlest Big City in the World’) is not your typical conference destination but it was hard to imagine a better spot for the 9th International IACFS/ME meeting. Much water has passed under the bridge since the plight of those Incline village residents made headlines across the country thrust this disease back out into the open. At the time Dr. Peterson was living the good life with a small practice in a resort town in Sierra Nevada ski country.… Read More
Sasha invites you to sign a new petition to the HHS to protect patients against the PACE trial, CBT and GET …
A brand-new and crucial #MEAction petition has just been launched, opening a new front in the rapidly escalating battle to protect ME/CFS patients from the misleading results of the PACE trial and similar studies.
The PACE trial was a £5 million UK trial, published in The Lancet, whose authors claimed that it showed that cognitive behavioural therapy and graded exercise therapy were beneficial for patients with chronic fatigue syndrome.
Patients have long criticised the trial’s poor methodology and bizarre analyses.… Read More
Ready to get technical? The research section contains overviews of chronic fatigue syndrome (ME/CFS) research topics. Created by and for laypeople they can – as befits the subject – be challenging.
The Brain in Chronic Fatigue Syndrome (ME/CFS)
– check out a series of papers on one of the most exciting place in ME/CFS research – the brain.
The Heart of the Matter?
… Read More
It can be hard for a newpaper’s picture editor to find an appropriate image to illustrate an ME/CFS article. ME/CFS is a seriously disabling disease with patients at the severe end of the scale tube-fed, lying in darkened rooms, unable to leave their beds.
Realistic photos would show people unkempt, not well groomed; in a home, not a work setting; in pyjamas or comfortable clothes, not office-wear; and lying down in bed or on a sofa, or being pushed in a wheelchair, or being treated in hospital. Men would be shown, as well as women.
The stock-library photographs below are appropriate images to represent people with ME/CFS in the media.… Read More
Over the years, Phoenix Rising has published interviews with scientists, clinicians, campaigners and patients. Many are listed below (with the most recent first), and the latest interviews can be found on our home page.
Scientists and clinicians
… Read More
For general information about ME/CFS, our own site, our forums, the various ME/CFS support groups and research charities are all good sources. You can also subscribe to our newsletter (see the right hand sidebar).
But there are some great, additional information resources out there: here are some of the most valuable.
Online video series
ME/CFS Alert: Llewellyn King is a well-known British journalist living in the US who specialises in US politics. When a friend of his developed ME/CFS, he was so appalled at the suffering of patients that he started ME/CFS Alert, a series of online video interviews with major figures in the ME/CFS world, including leading researchers and clinicians.… Read More
You can, with care and supervision, do a rough-and-ready test at home for orthostatic intolerance: the ‘poor man’s tilt test’. This will give you an indication of whether you are likely to have orthostatic intolerance.
Formal, more reliable diagnosis of orthostatic intolerance is done in a clinical setting using a ‘tilt table test’ in which a patient lies flat on a table which is then tilted through about 70 degrees until it is almost vertical. The table has a footplate that takes the patient’s weight in this position.
The patient remains completely immobile while their heartrate and blood pressure are monitored, usually until the point at which they develop symptoms.… Read More
Professor Olav Mella (left) and Dr Oystein Fluge
Sasha gives the background and Simon gives the interpretation of the latest study from Haukeland, published today…
It’s out! Dr Øystein Fluge and Professor Olav Mella have published their new study in PLoS ONE. And though the study was not a blinded, placebo-controlled trial, the results are further evidence that rituximab is beneficial in some ME/CFS patients, and potentially life-changing for a substantial minority. The findings also give important new insights into the optimum dosing schedule to maintain those benefits in the long run.
We all know the story that led up to this study: cancer specialists Fluge and Mella treated an ME patient for cancer with the immune-system drug rituximab.… Read More
Can you take the heat? Join Simon McGrath in support of the Chilli ME Challenge …
Watch renowned researchers Drs. Ian Lipkin and Mady Hornig take the Chilli ME Challenge, LIVE from New York by webcast this coming Wednesday, 1st July at 1 p.m. EST.
To spice things up, the researchers from Columbia University have promised that the more you give, the hotter the chilli peppers they will eat! And every dollar goes directly to their cutting-edge programme of ME/CFS research.
Some like it hot
Their spice-o-meter currently shows they will be eating spicy jalapeño chillis, and are just shy of taking on red hot Thai chillies.… Read More
Clark Ellis brings us Part 2 of an interview with Dr. Lucinda Bateman, where she answered questions posed by the patient community …
The Institute of Medicine recently published its report into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). One of the committee members, Dr. Lucinda Bateman, graciously agreed to answer questions submitted by members of the patient community.
Questions were submitted on the Phoenix Rising forum and they can all be viewed here.
Questions have been arranged roughly by topic and have been published in two parts. Part 1 can be found here. Part 1 covered questions on the committee and IOM process, and the IOM’s diagnostic definition.… Read More
As the 16 January, 2015 deadline for responding to the controversial P2P draft report draws near, and in the interests of balance and representing the whole community, Phoenix Rising presents two differing views on how to react. Today, Clark Ellis flags up important content to critique and to praise in the report. In her article, Gabby Klein makes the case for protesting the P2P process and not responding to its content.
P2P, or not P2P, that is the question.
So what’s the answer? When you boil it down there are only really two options.
1. The P2P process is flawed and invalid and we should either fight it, or ignore it, rather than participate.… Read More
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals. The Semi-Finals are now underway and require casting a daily vote through Dec 10th. Voting ends at 4pm EST on December 10th. The top 20 from the large prize division will become Finalists in the judging phase to determine how much each project will receive. Each Finalist is guaranteed $5,000 and could win up to $100,000!
Voting Is Simple!
… Read More
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients …
Thirty years of neglect, incompetence and malfeasance by the Department of Human services (HHS) have rendered ME patients angry, frustrated and disgruntled. They remain invisible, misunderstood and very sick.
Any possible advance in the science of the disease has been squashed by the gross lack of funding by NIH for this severe disabling disease. In addition, the lack of education of the disease in medical schools has insured the lack of care for patients nationwide.… Read More
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS.
The focus of this article is to build upon the previous article and explore how the hypotheses surrounding ME/CFS and nitric oxide weigh up against one another. It is therefore advised to read Part 1, which can be found here, first.
In the last article we explored what exactly nitric oxide is, how it is produced in the body and the numerous different functions it has over a variety of different bodily systems.… Read More
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses on what nitric oxide is, how its produced and what exactly it does …
Over the years there have quite a number of proposed disease mechanisms relating to nitric oxide (NO) problems of patients suffering with ME/CFS. Studies have however, over the years, proven somewhat inconclusive in the past.
Dr. Pall is historically one of the staunch believers in the hypothesis that ME/CFS is a result of abnormal functioning of the nitric oxide cycle and the downstream effects this can have.… Read More
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut …
This is the second in a series of articles reporting on the 9th Invest in ME International ME Conference (IIMEC9), held as usual in the Lecture Theatre at 1 Birdcage Walk in Westminster on May 30th, 2014.
You can view the full conference programme (with biographies of the speakers) here, and the Conference Journal is available as a PDF document here. Invest in ME have posted a conference report by Dr.… Read More