Friday, 22 February 2013

A Reflection: Gain or Loss

Mum has been writing again; this time it is a little ME related article called “A Reflection: Gain or Loss”. I have inserted the text below and it is also available to download as a PDF file by clicking here.

A Reflection: Gain or Loss

The words attributed to a well-known psychiatrist have been on my mind recently. He said that people with Myalgic Encephalomyelitis (M.E.) “want a physical diagnosis for financial gain.” Now it would seem to most of us ordinary folk that a physical illness is best diagnosed as being physical. Anything else can only lead to confusion. If we take it that our benefits system pays out more to the physically ill than to the mentally ill and likewise the medical insurance companies, then one might try to save them money if they, rather than the patient, were the first concern. Could there possibly be some conflict of interest in the psychiatrist’s statement?

Leaving all these financial matters to one side, it is interesting that the word “gain” should be used at all in considering serious illness. Had the gentleman ever considered the loss involved? When M.E. begins suddenly, it can be a bit like the first chapter of the Biblical book of Job. In one day the list of losses can be long and frightening: health, work, career prospects, financial independence, friendships, for young people opportunities for marriage and a home, plus a host of normal activities which are no longer possible. Certainly it is good to live in a country where some financial assistance is available to those who cannot work. But putting all the losses in one column and a life “on benefits” in the other, does the word “gain” readily spring to mind? Of course remembering those whose M.E. begins in a more gradual fashion, the end result is the same, the sense of what has been lost coming on more gradually.

The question has to be asked whether some people inhabit an altogether different realm from the rest of us, a place where parents actually strive to obtain all the complications of a sick child in the house, a place where previously happy, active people suddenly choose to live within four lonely walls, afraid to continue all the interests and activities, which hitherto brought satisfaction.

It would be good if those who influence the medical world could join the world we live in. Perhaps if they saw the loss, the sorrow and yes, the frustration of those who long for the life they once knew… perhaps they might express more compassion and less contempt.

It may be that someone will read this page who suffers from a long-term illness other than M.E, knowing well many of the losses referred to. Does the question then arise, “why do people with M.E. complain so much, as if they are the only ones whose lives have been turned upside-down by long illness?” The answer is that there is one extra burden reserved for M.E. sufferers. This is the fact that this illness is generally coped with without medical support or even acknowledgement of its serious nature. It is this which complicates management of the condition and causes so much distress to sufferers and their families.

© Jean Stapleton
February 2013

A previous article by Mum, “An Illness called Cough”, is still available online here.


Friday, 8 February 2013

22 Years

Today, the 8th February 2013, marks 22 years of my being ill with ME. I thought it a good time to post another favourite hymn and also a short poem -


Nearer, still nearer, close to Thy heart,
Draw me, my Saviour, so precious Thou art;
Fold me, O fold me close to Thy breast,
Shelter me safe in that "Haven of Rest,"
Shelter me safe in that "Haven of Rest."

Nearer, still nearer, nothing I bring,
Naught as an off'ring to Jesus my King;
Only my sinful, now contrite heart,
Grant me the cleansing Thy blood doth impart,
Grant me the cleansing Thy blood doth impart.

Nearer, still nearer, Lord, to be Thine,
Sin, with its follies, I gladly resign;
All of its pleasures, pomp and its pride,
Give me but Jesus, my Lord crucified,
Give me but Jesus, my Lord crucified.

Nearer, still nearer, while life shall last,
Till safe in glory my anchor is cast;
Through endless ages, ever to be,
Nearer, my Saviour, still nearer to Thee,
Nearer, my Saviour, still nearer to Thee.

Leila N Morris, 1862 – 1929


The following poem is taken from “Echoes of Eternity” by Michael R Abbott; used with permission.

Refuge For The Soul

Rest to the weary, joy to the sad,
Hope to the faithful, peace to the bad:
All that is needful is found in the Lord;
Jesus the Saviour be praised and adored.

Those who are lost in the byways of life,
Cumbered with cares and surrounded by strife,
Find in the Saviour a refuge secure:
A guide in the night and a light to endure.

Sinners bereft of their hope, bound by sin,
Troubled by conscience, unable to win,
Rise at the sound of the Saviour’s dear voice;
By Him they are freed and in Him they rejoice.


What a comfort it is to know that, for those of us who are Christians, "The eternal God is thy refuge, and underneath are the everlasting arms" (Deuteronomy 33v27), and just this morning I listened to an encouraging message "Knowing God - Or rather Known of God" (to listen to the message, click here).


Tuesday, 5 February 2013

America’s First Institute for Neuro Immune Medicine to Open on Feb. 12

http://www.newswise.com/articles/america-s-first-institute-for-neuro-immune-medicine-to-open-on-feb-12

Newswise — FT. LAUDERDALE-DAVIE Fla. — Nova Southeastern University’s College of Osteopathic Medicine (NSU-COM) will hold a grand opening for America’s first Institute for Neuro Immune Medicine on Feb. 12.

Located at NSU’s main campus in Davie, the Institute will be the only one of its kind in the nation that will treat patients with conditions such as chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and Gulf War Illness (GWI), as well as conduct basic and clinical research under one roof in this field.

The Institute will also be the first in the nation to study neuroinflammatory and neurodegenerative disorders such as CFS/ME, GWI, Parkinson’s Disease and multiple sclerosis using the newest genomic techniques.

By studying individual genes and what they code for, the Institute’s scientists will better understand the cause and point to new ways to treat these complex disorders. The idea is to challenge the patient with something like exercise and measure which genes turn on or off and to better understand the cause of relapse and illness persistence and find points of intervention. This important basic research will provide answers that will help scientists develop new pharmaceutical medications to treat these illnesses.

The Institute will have research laboratories, a patient clinic, a clinical research unit, faculty offices and conference facilities. It’s designed to put together multiple core medical and scientific disciplines in one place: clinicians, educators and researchers in the areas of genomics, virology, immunology, cellular biology, computational biology and therapeutic modeling.

“We have created a one-of-a-kind think tank that will become the leading neuro immune medicine institute of its kind in the United States,” said the Institute’s director Nancy Klimas, M.D., who is one of the world’s leading researchers and clinicians in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). “It will be a place to coordinate cutting edge thinking and research, train new practitioners, and offer the highest quality clinical care for a hugely underserved population. We are thrilled to take this giant step forward in the field of CFS/ME and Gulf War Illness care and research.”

The Institute partners with the Miami VA Medical Center in the Gulf War Illness research program. It will compliment an existing NSU-COM clinic Klimas oversees in Kendall, which treats CFS/ME, GWI and other patients suffering from neuro immune disorders. When the Institute begins seeing patients on March 1, both facilities will accommodate around 1,300 patients from South Florida, throughout the nation and around the world.

By bringing together some of the best scientific minds in the world, the facility will act as both a working institute for research, train new clinicians, and provide diagnostic and therapeutic clinical care.

In addition to seeing patients and conducting research, Klimas and her team are conducting clinical trials for the drug Ampligen, which would be the first-ever medication to treat CFS/ME if approved by the Food and Drug Administration (FDA).

CFS/ME is a debilitating immune disorder that affects more than one million Americans. A majority of CFS/ME sufferers are women, who remain mostly untreated. The disease damages the patient’s immune system and causes symptoms such as extreme fatigue unabated by sleep, faintness, widespread muscle and joint pain, sore throat, severe headaches, cognitive difficulties, and severe mental and physical exhaustion. CFS/ME symptoms typically last for more than six months, often decades. Those suffering from the disease find their lives dramatically altered to the extent that working and completing simple tasks become difficult or impossible.

Gulf War Illness is a medical condition that affects veterans and civilians who were exposed to a number of triggers, including chemical weapons during the 1991 Gulf War. Symptoms include musculoskeletal pain, fatigue, skin rashes, cognitive problems, and diarrhea.

The Institute is part of NSU’s initiative to bring world renowned researchers to campus. The Schemel Family Foundation has generously donated $2 million to establish an additional endowed professorship, the Schemel Professor for Neuro Immune Medicine in neuroimmunology, at the Institute to work directly with Klimas. In addition, a beautiful patient waiting area was generously contributed by the Maroone Family.

The grand opening ceremony, which starts at 6 p.m., will be by invitation only. The event is not open to the public.

Members of the news media are invited to attend without an invitation. Please call Ken Ma, M.B.A., associate director of NSU Public Affairs, only if you are a news media member who would like to attend. He can be reached at 954-621-7961 or ken.ma@nova.edu

###

About NSU’s College of Osteopathic Medicine: The mission of the College of Osteopathic Medicine is to provide learner-centered education, both nationally and internationally, for osteopathic medical students, postgraduate trainees, and other professionals. Through its interprofessional programs, the college prepares competent and compassionate lifelong learners; supports research, scholarly activity, and community service; and advocates for the health and welfare of diverse populations, including the medically underserved. NSU-COM. http://medicine.nova.edu/

About Nova Southeastern University: Situated on 300 beautiful acres in Davie, Florida, Nova Southeastern University is a dynamic fully accredited research institution dedicated to providing high-quality educational programs at all levels. NSU is the eighth largest not-for-profit independent institution nationally with more than 28,000 students. NSU awards associate’s, bachelor’s, master’s, specialist, doctoral and first-professional degrees in a wide range of fields. Classified as a research university with “high research activity” by the Carnegie Foundation for the Advancement of Teaching, NSU is one of only 37 universities nationwide to also be awarded Carnegie’s Community Engagement Classification. www.nova.edu

Friday, 1 February 2013

Professor White and Professor Wessely's response to the Countess of Mar

http://www.meactionuk.org.uk/White-and-Wesselys-final-Response.html

(It seems to me that they are not even going to attempt to answer the points raised by the Countess of Mar.)

Here is the response to the Countess of Mar's letter from Professor White and Professor Sir Simon Wessely:

Dear Lady Mar,

Thank you for your recent email and letter.

We are disappointed that your response quotes sentences from various papers and presentations without context to seek to confirm conclusions already arrived at; conclusions we do not share. We cannot even agree the meaning of terms, let alone a more detailed analysis of the literature. As one example, perpetuating or maintaining factors of a medical condition are not the same as the causes of the condition. So, treatments tested and shown to be effective in the PACE trial do not address the infection that may have started CFS, but do help patients address particular barriers to their recovery, which are often nothing to do with an original infection.

With regret, we believe that continuing a correspondence will not bring our views closer together.

Yours sincerely,

Professor Peter White and Professor Sir Simon Wessely

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

The Countess of Mar's letter can be read here:

http://www.meactionuk.org.uk/Reply-to-PDW-and-Sir-Simon.htm