Archive for the ‘CFS’ Category

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Chronic Pain – and its Costs

February 6, 2011
NY Times, February 4, 2011

Treating Chronic Pain and Managing the Bills

By MICHELLE ANDREWS

MAYBE the question is not who suffers from some type of chronic pain, but who doesn’t?

“If you tally up everybody who has chronic, recurring back, headache and musculoskeletal problems, it includes almost everybody by the time people get into their 30s,” said Dr. Perry Fine, a professor of anesthesiology at the Pain Research Center and the University of Utah and incoming chairman of the American Academy of Pain Medicine.

Given the prevalence of chronic pain — often defined as recurrent pain that lasts more than three to six months — you might expect that by now medical science would have figured out how to alleviate it and that health insurers would routinely cover its treatment.

If only it were that simple. Pain is a sneaky opponent. Invisible, it cannot be detected with a blood test or a scan; sometimes it has no identifiable cause. Pain is perception, and what one person considers intolerable may be only moderately uncomfortable to another.

This makes treatment challenging. And insurers often do not make it any easier.

For the last 15 years, Ernie Merritt III, 46, has been coping with the aftermath of a back injury he suffered working as a pipefitter in southeastern Maine. At the time, he thought he had just pulled a muscle. But after an M.R.I. revealed a herniated disc pressing on his sciatic nerve, he underwent the first of four operations.

Surgery has not been enough. Mr. Merritt’s back still hurts, and now he must wear a brace full time to stabilize it. He has developed carpal tunnel syndrome and shoulder problems. The nerves in his legs are damaged, and doctors cannot figure out why.

Because Mr. Merritt is disabled, he qualifies for Medicare, but he says he had to drop the Part B outpatient portion of the coverage. With all of his doctor visits — neurologists, orthopedists and physical therapists, not to mention his regular primary care physician — the 20 percent co-insurance charges were more than he and his wife could afford.

Now he pays $3,000 a year for coverage with his wife’s health plan through her job at the county courthouse. Specialist co-payments are a flat $15 per visit, and he can see his primary care doctor free.

Given his medical needs, it was the right decision, he said: “I have so many things going on that they can’t explain.”

If you have chronic pain, chances are you have discovered that getting the care you need at a price you can afford can be, well, excruciating. These suggestions may help.

A MEDICAL ‘HOME’ The most common causes of chronic pain are musculoskeletal conditions — including arthritis, lower back problems and fibromyalgia — and recurrent headaches. Chronic pain also afflicts many patients with such serious illnesses as cancer, AIDS and irritable bowel syndrome.

Pain management almost always involves medication, and physical or occupational therapy is common. But there is no one-size-fits-all approach, and patients often see several doctors on a regular basis.

It is important to find a primary care provider who will serve as your “medical home” and will work with you to coordinate care. You will avoid duplicative tests and procedures, and you are more likely to find the care you need.

In addition, many primary care doctors provide therapies like nerve blocks, said Dr. Roland A. Goertz, president of the American Academy of Family Physicians. A savvy primary care physician can help keep expenses in check.

MENTAL HEALTH People with chronic pain are twice as likely to suffer from depression and anxiety as the general population, but insurance coverage for mental health problems often is inadequate for these patients. Fortunately, the recently passed mental health parity law should help make those services more available.

Until then, consider some alternate community resources. Stanford University, for instance, has developed a chronic disease self-management program that is available in nearly every state through local area agencies on aging. The six-week program teaches participants relaxation and cognitive behavioral therapy techniques, among other things, and is free in many areas.

For a quicker fix, check out the American Chronic Pain Association’s free five-minute relaxation guide.

STRETCHING OUT “People in pain don’t exercise,” said Penney Cowan, founder and executive director of the American Chronic Pain Association. Big mistake. Exercise is one of the most effective and most affordable ways to manage chronic pain. Gentle stretching and exercises to increase range of motion and strength training are all helpful. (Get the go-ahead from your doctor before starting, though.)

Although physical and occupational therapy are often recommended for people with chronic pain, insurance plans typically cover only a limited number of sessions. Make the most of your visits by asking the therapist to teach you what you can do on your own, said Dennis Turk, a professor of anesthesiology and pain research at the University of Washington.

“Eight to 15 sessions of physical therapy may be more than enough if the patient is learning what to do on their own,” he said.

INSURANCE APPEALS Insurance coverage for many types of pain management treatment is often inadequate, say advocates and physicians who treat it. Medication and interventional therapies like nerve blocks are more likely to be routinely covered than physical or behavioral therapy.

Part of the problem is that pain management is complex, and people respond to therapies differently. “When people keep coming back and saying something’s not working, insurers begin to doubt that reality,” Ms. Cowan said.

If your plan turns down your request for physical or behavioral therapy, or any other treatment, get a copy of the policy and read the fine print, said Jennifer C. Jaff, executive director of Advocacy for Patients With Chronic Illness.

If the policy says therapies are covered only if they are medically necessary, for example, you may be able to challenge the denial in an appeal. Sometimes insurers say they are denying coverage because you have not shown improvement, a standard that someone with chronic pain may find impossible to meet. Appeal those decisions, too. Ms. Jaff’s organization files free insurance appeals for patients.

AFFORDABLE DRUGS Medication is a mainstay for people with chronic pain, and drug therapy is one of the few chronic pain treatments that insurance plans reliably cover, said Mr. Turk.

Even if you have coverage, however, it can be tough to figure out which drugs will effectively manage your pain. People with severe chronic pain may take prescription opioids like codeine and oxycodone, as well as antidepressants and muscle relaxants.

Some insurers require that patients do “step” therapy: trying to relieve symptoms with aspirin for a few months, for example, before going on to a more powerful painkiller. In addition, some doctors are reluctant to prescribe some analgesics because they fear serious side effects and worry that patients may become dependent on them.

It is important to find a doctor who will work with you to find a drug regimen that manages your pain and who will advocate on your behalf with an insurer. As with any drug, it pays to ask your doctor if an older, generic drug might be a reasonable substitute for a brand-name prescription.

If you do not have insurance or if a drug you need is not on your plan’s list of covered drugs, check out needymeds.org, a clearinghouse for programs that provide free or discounted drugs to people, generally based on income.

http://www.nytimes.com/2011/02/05/health/05patient.html
FAIR USE NOTICE: This may contain copyrighted (C ) material the use of which has not always been specifically authorized by the copyright owner. Such material is made available for educational purposes, to advance understanding of human rights, democracy, scientific, moral, ethical, and social justice issues, etc. It is believed that this constitutes a ‘fair use’ of any such copyrighted material as provided for in Title 17 U.S.C. section 107 of the US Copyright Law. This material is distributed without profit.

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Sick Housing

February 5, 2011

Sweden has its own sickness

By Ritt Goldstein
DALARNA, Sweden – As shock waves continue to emanate from Stockholm’s recent terror bombing, such an event appearing all but unthinkable given the Sweden most people perceive, ongoing revelations highlight that Sweden has had some disturbing changes. In many ways, today’s Sweden faces the same problems as other countries, including corruption and the sometimes nightmarish impact of it.

Emphasizing Swedish corruption’s gravity, the vast bulk of cases that have come to light are occurring in municipal housing companies and the construction industry, with the substantive “human costs” of these scandals only beginning to be appreciated. So-called “sick houses”, the significant health issues they’ve meant, are a recognized problem in Sweden, with the ongoing scandals now suggesting why.

“This is something that really needs to be looked upon and looked into,” said Justice Chancellor Anna Skarhed of the scandals’ health impact, sternly observing for Asia Times Online that “there is even more of this [the effects of corruption] than we’ve already seen, which is quite enough, and too much as it is.”

China’s infamous melamine scandal is said to have affected 300,000 people, or about .024% of its populace. But over 10% of Sweden’s people are suffering varying degrees of ill health effects from badly constructed or maintained housing, with a not insignificant number suffering quite severely.

In 2008, Scandinavia’s largest paper, Aftonbladet, noted, “In a new study from [Sweden's] Umea University, it was found that 45% of those affected by sick buildings – and who received medical treatment at a hospital clinic – are unable to work. Of these, 20% receive a disability pension, and 25% are on sick leave.”

For much of its recent history, Sweden has represented what many consider the embodiment of governmental integrity and efficiency, with typical Swedes following rules so closely that virtually none even “jaywalk”. Decades of cradle-to-grave government benefits have created a deep-felt faith in the authorities, present events providing a decidedly rude awakening for most, though not all.

Leif Kavestad – author of the Swedish book Sick Houses, building engineer, and a former environmental inspector who was personally decorated by the prior prime minister – has charged that “when residents complain about health hazards and health problems in municipal housing, it’s not uncommon for the municipality to hire ‘consultants’ that will declare the property safe.” Kavestad pointedly told ATol that “in legal disputes, the environmental agency always accepts the word of the municipality’s ‘bought’ consultants. Tenants which complain over sick buildings with health complaints are sometimes threatened – the parties together can act like a mafia against the tenants.”

In Sweden, municipal housing provides the majority of the country’s rental apartments, some being “high-end” properties.

“It’s a big problem, and it’s a big problem for the trust in the authorities and the trust in the kommun [municipality] … it has to be dealt with, and seriously,” said Gustav Gellerbrant , spokesperson and political advisor for Justice Minister Beatrice Ask, regarding the human consequences of housing corruption.

Over the past months, increasing numbers of Swedes are examining their surroundings through new eyes. “Bribes are more common than we thought”, “Bribery cases in many municipalities”, “Corruption and abuse of power in Swedish municipalities” – these headlines representing but a few of the recent months’ revelations. Law-enforcement authorities have seen a change.

Prosecutor Gunnar Stetler, director of the Swedish prosecution authority’s National Anti-Corruption Unit (Riksenheten mot korruption), described for ATol the current level of municipal corruption complaints to his office as “at least 50% higher” than the same period last year. A new investigative group within the National Police to investigate corruption – including cross-border questions and financial crime – is also now being worked on, Stetler emphasized, describing expectations that the yet ongoing discussions would be finalized “during December, or during January”.

Both Stetler and Justice Chancellor Skarhed are among a handful of key contributors to the new police group’s formation, Chancellor Skarhed noting “the information I have from the prosecutor’s office and the Riksenheten mot korruption strongly indicates that the resources the police have given to these [corruption] investigations have not been adequate for quite some time.” The chancellor expects the new group to be formed in January.

Adding another dimension to the corruption problem, in September three rights groups filed a criminal complaint against Saab, alleging bribery was involved in the sale of Swedish fighter aircraft to South Africa. Prosecutor Stetler describes the status of this case as under “active consideration”, a determination on the opening of a preliminary investigation yet to be forthcoming. But Stetler’s unit has been busy.

Corruption revelations began detonating in April, with an investigative TV program resembling a Swedish version of 60 Minutes entitled Uppdrag Granskning (UG), exploding municipal corruption onto the national agenda. Their report centered on “bribery and corruption in Gothenburg”, Sweden’s second-largest city, and today a place where all four of the city’s municipal housing companies have come under the National Anti-Corruption Unit’s investigation.

Following the UG reports, charges ranging from aggravated corruption and fraud to breach of trust and embezzlement have become among those being investigated. Individuals focused on include local officials, municipal company executives, and construction industry figures.

Drawing considerable outrage, funds earmarked for construction and renovation of municipal housing appear to have gone to luxurious additions to officials’ private homes. “If you are ‘well-connected’ locally … there might be people then who are prepared to ‘bend the rules’ to give you favors, and maybe they get favors back. And we know that this happens in municipalities,” said corruption expert and political scientist Staffan Andersson of Sweden’s Linne University, cutting to the issue of so-called local “strongmen”, an issue well publicized as a key corruption problem.

This autumn, Swedish National Television (SVT) aptly kicked off a new comedy series about an inept and corrupt municipal politician,Strong Man (“Starke man”), parodying the kinds of corrupt behaviors that have been making headlines.

Over the past 20 years, Sweden privatized increasingly large segments of its public sector, particularly in municipalities. It set up hybrid companies that were owned by municipalities but operated as semi-independent firms, firms with far looser controls than when their work was done as an official municipal organ. “We have been so focused on productivity, efficiency, and cost savings … but there’s also another side,” Andersson explained. He added that when it came to effective controls within these new entities, events have “not been running as quick as we have done with productivity”, questioning whether today’s controls fit “the kind of administration we had 20years ago”.

Illustrating his point, Andersson emphasized for ATol that “there are a lot of instances where … municipalities are actually carrying out authority in a way which is regarded as illegal by courts, administrative courts, but they actually do it anyway”. Paralleling this, an October SVT news report had earlier revealed how some municipal auditors whitewashed wrongdoing, then received legal immunity from the municipality for their actions, leaving no one legally culpable.

Pockets of widespread and deeply entrenched municipal problems have been increasingly seen.

In Falun, the municipal housing company, Kopparstaden, is particularly noteworthy, first making national headlines in 2009 with a story about its chief executive officer (CEO) and pornography. Following this, the CEO violated company rules by purchasing property for Kopparstaden’s new headquarters from a close friend.

The transaction was first stated as approximately 3 million Swedish kronor (US$440,000), then later “revised” to about five million. Subsequent research revealed that the “revision” was due to debt which was acquired by Kopparstaden with its property purchase, though, according to the City of Falun’s accounting firm, KPMG, apparently no documents were presented to Kopparstaden’s board regarding that debt.

Kopparstaden’s new headquarters eventually cost a third over budget, KPMG reporting that the firm’s internal controls “had not worked”, and that its CEO had wanted a 295,000 kronor tennis court at the new office. Subsequently, the CEO was quoted by a local paper as claiming KPMG was in error on its cost figures, that the new headquarters was in reality “great business“.

When contacted, Kopparstaden refused to be interviewed for this article.

Prosecutor Stetler noted that the KPMG report indicated Kopparstaden violations of “law or regulation”, but he added that under current Swedish law, it was necessary to prove “intent” in order for a prosecution to occur. Wrongdoing in itself is not actionable.

Andersson blamed weak municipal scrutiny and weak legal sanctions as key corruption problems.

Beyond financial issues, Kopparstaden has made headlines regarding tenant health problems, some health issues being severe, one even life-threatening. Notably, similar to its pronouncements on KPMG’s “error”, in court documents the firm describes an apartment the local environmental authority condemned as uninhabitable to be without any serious damage; though, substantive injuries to the tenant had resulted, and tests revealed the apartment had “unusually high” levels of toxic chemicals such as chloroform and benzene, plus a “powerfully elevated” mold level.

Notably, a report published by Swedish corruption researchers in November 2008, “Public Corruption in Swedish Municipalities – Trouble Looming on the Horizon?”, did warn of potential problems with the municipal hybrid firms.

In subsequently explaining how Sweden’s municipal corruption grew, one of the report’s authors, political scientist Gissur Erlingsson of Linkoping University, placed blame on both the creation of “fast and loose” municipal hybrids, and an erosion of whistleblower protections beginning in the mid-1990s, saying “people got more and more wary and afraid of losing their job”.

Examining another aspect of events, Dr Daniel Burston (PhD Psychology, PhD Social and Political Thought), chair of Pittsburgh’s Duquesne University psychology department, observed a culture of corruption always contains a large “group of passive and increasingly indifferent people who simply ‘go along’ with the status quo”. “They try to avoid losing what they have by not opposing the strongmen and their agents, and offering them bribes or ‘cover’, when necessary”, Burston outlined for ATol, adding that such conduct “becomes the ‘new normal’, and so routinized, in many ways, that it becomes completely unconscious – a tacitly accepted part of prevailing social and cultural expectations.”

In societies where those in authority are particularly respected, Burston observed that public opinion, combined with the phenomenon of “group think”, might well enable “corrupt leaders to gather the mantle of respectability around their shoulders, and then operate unhindered as ‘wolves in sheep’s clothing’.”

“Prosecution has preventative effects,” law professor Claes Sandgren of Stockholm University emphasized, “you don’t just prosecute to put just one individual in prison, you also prosecute to deter others.”

Ritt Goldstein is an investigative political journalist whose work has appeared widely, including in the US’s Christian Science Monitor, Spain’s El Mundo, Austria’s Wiener Zeitung and Australia’s Sydney Morning Herald, as well as with other significant members of the global media.

http://www.atimes.com/atimes/Front_Page/LL22Aa01.html

FAIR USE NOTICE: This may contain copyrighted (C ) material the use of which has not always been specifically authorized by the copyright owner. Such material is made available for educational purposes, to advance understanding of human rights, democracy, scientific, moral, ethical, and social justice issues, etc. It is believed that this constitutes a ‘fair use’ of any such copyrighted material as provided for in Title 17 U.S.C. section 107 of the US Copyright Law. This material is distributed without profit.

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‘Reasonable’ accommodations?

February 9, 2009

Quote: “You don’t become disabled because of your illness. You become disabled because of poverty. You lose everything to this disease.”

‘Reasonable’ accommodations?
Palo Alto woman, housing corporation battle over disability, responsibility

Friday, May 9, 2008
http://www.paloaltoonline.com/news/show_story.php?id=7981

by Sue Dremann
Palo Alto Weekly Staff

A disabled woman is being evicted from her apartment by the Palo Alto Housing Corporation after 15 years of battling over what constitutes “reasonable accommodation” for her disability.

Beth Bradach, 53, has three conditions — chronic fatigue and immune dysfunction (CFIDS) myalgic encephalomyelitis (ME), and combined immune deficiency — that cause her to become ill when exposed to tiny amounts of chemicals.

Everything from molds to pesticides to laundry soap make Bradach’s throat close down and could lead to lung infections, diarrhea and sores, she said. Her caregivers must wash their clothes and themselves in water free of detergents before visiting her.

But years of accommodating her disability have created an unreasonable administrative and financial burden on the Housing Corporation, which provides affordable rental and ownership housing, according to its staff.

They have put in natural-fiber rugs without toxic glues in adjacent apartments and used paints low in volatile organic compounds when refurbishing other units at the Plum Tree Apartments on Emerson Street, they said. When they needed to spray for pesticides, they found a place for Bradach to move to until the work was completed. And they have refrained from renting out units adjacent to Bradach’s for the past two years.

But adjusting to her needs has created an unreasonable accommodation to other tenants, staff now say, and it is time for Bradach to move out.

The controversy illustrates the difficult dilemma individuals with chemical sensitivities, such as Bradach, have in getting housing — and housing providers have in accommodating them without creating significant hardship for themselves and their other tenants.

The dividing line between what is “reasonable” and what is not is not that easy to define, according to experts.

Reasonable accommodation law was created to give people with disabilities equal access to employment and housing. But there are limits, the experts say.

In general, reasonable accommodation is defined as any changes in rules, policies, practices or services that may be necessary to afford a person with a disability an equal opportunity to use and enjoy a dwelling, according to Bill Branch, deputy director of communications for the California Department of Fair Employment and Housing.

“A request for accommodation made by a tenant with a disability is presumptively reasonable unless a housing provider can demonstrate that it would result in an undue administrative or financial burden. In that instance the law requires that the tenant and the landlord engage in an ‘interactive process’ in an attempt to arrive at a mutually acceptable conclusion,” he added.

But reasonable accommodation is decided on a case-by-case basis, according to Stanford Law School Professor Richard Thompson Ford.

“There are limits even when there is no doubt that a plaintiff needs accommodation. It’s not as if a landlord is required to spare no expense,” he said.

Advocates for people with CFIDS say that housing accommodations are among the hardest cases to resolve, according to Gail Kansky, president of the National CFIDS Foundation.

“We’ve encountered this over and over again,” she said.

Bradach alleges the housing corporation has repeatedly violated her legal rights, even though she notified staff of her disability when she moved in in 1992. When the apartments were sprayed for pesticides that year, Bradach developed ocular and rectal sores and her hair fell out two weeks afterward.

“I was in so much pain, I was just looking for a cold, dark place to hide,” she said.

In February 2002, a California Department of Fair Employment & Housing investigator concluded, and another investigator agreed, that housing corporation officials had violated her reasonable accommodation through inconsistent and vague notices or accounts of the substances to be used at the apartments.

Bradach proposed in 2005 that the housing group could dedicate the five units in her building to “green housing” for the chemically sensitive, similar to Ecology House in San Rafael.

But housing corporation officials said they don’t see their role as supporting such housing <0×2014> particularly since there are so many other tenants in need.

The final straw for the housing group involved building repair and termite control.

Staff wanted to spray orange oil and other chemicals they said a pest-control company deemed safe to eradicate the insects. But Bradach’s doctor, Randy S. Baker of Soquel, Calif., said the oil and other chemicals would not be safe alternatives for Bradach.

Bradach pushed for a super-heating method to eradicate the insects, but housing corporation officials said it is not effective and could risk setting the building on fire.

On May 1, the housing corporation sent Bradach a 90-day notice to vacate her apartment.

“We have tenants in need of housing, and we have an obligation to provide it. We’re risking the welfare of other tenants — we can’t let our building fall apart. We’ve exhausted our resources with trying to find her other housing,” Candice Gonzalez, the corporation’s executive director said. “We don’t know what else to do at this point.”

The group, which rents out 600 units, also claims it has lost $75,000 by not renting out the neighboring apartments.

Bradach says she has nowhere to go.

“They’ve always got me between a rock and a hard place,” Bradach said, her voice reedy and rattling on the phone. “I’m supposed to find my own place but most days I’m too sick to even get up off my couch.”

Ann Marquart, executive director of Project Sentinel, a Palo Alto fair-housing agency that has been trying to help Bradach, said the only viable solutions are to find a stand-alone unit that meets Bradach’s needs or to create a building for the chemically sensitive.

Kansky said her organization has a donor who has offered to pay the difference above reasonable costs to use “fully green” alternatives in the building’s renovations. She estimated the costs above the housing corporation’s share to be $5,000 to $8,000.

“The problem is she shouldn’t really have to get out. Yes, it’s difficult, but it isn’t insurmountable,” Kansky said.

The question of reasonable accommodation is almost a question in itself, according to Marquart.

“Do we have a question of reasonable accommodation if this is a person’s life?” she said.

Bradach recalled when she was a vibrant, contributing member of society with a degree in botanical taxonomy and a potential job at the Smithsonian Institution. Then, people didn’t find her annoying. On good days, she is a better advocate for others than she is for herself, she said. She has helped people with bipolar disorder get the treatment and benefits they need.

“It’s easier to get what you need if someone else is an advocate for you. People don’t want to hear it — and they don’t want to hear it from the person who’s asking for help for themselves. We’re shrill. People think you are crazy.

“I got sick with the disease, but the way I got disabled is that I lost all my money to this disease. You don’t become disabled because of your illness. You become disabled because of poverty. You lose everything to this disease,” she said.

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“CFS is real”

February 8, 2009

SUMMARY: ‘Functional’ symptoms, as occurring in CFS and somatization, have a genuine organic cause, that is activation of peripheral and central IO&NS pathways and gut-derived inflammation.

[Comment: In other words they are physical, NOT psychological.]

Curr Opin Psychiatry. 2009 Jan;22(1):75-83.

Inflammatory and oxidative and nitrosative stress pathways underpinning chronic fatigue, somatization and psychosomatic symptoms. http://www.ncbi.nlm.nih.gov/sites/entrez/19127706

Maes M., Clinical Research Centre of Mental Health (CRC-MH), Antwerp, Belgium. crc.mh@telenet.be

PURPOSE OF REVIEW: The aim of this paper is to review recent findings on inflammatory and oxidative and nitrosative stress (IO&NS) pathways in chronic fatigue and somatization disorder.

RECENT FINDINGS: Activation of IO&NS pathways is the key phenomenon underpinning chronic fatigue syndrome (CFS): intracellular inflammation, with an increased production of nuclear factor kappa beta (NFkappabeta), cyclo-oxygenase-2 (COX-2) and inducible NO synthase (iNOS); and damage caused by O&NS to membrane fatty acids and functional proteins. These IO&NS pathways are induced by a number of trigger factors, for example psychological stress, strenuous exercise, viral infections and an increased translocation of LPS from gram-bacteria (leaky gut). The ‘psychosomatic’ symptoms experienced by CFS patients are caused by intracellular inflammation (aches and pain, muscular tension, fatigue, irritability, sadness, and the subjective feeling of infection); damage caused by O&NS (aches and pain, muscular tension and fatigue); and gut-derived inflammation (complaints of irritable bowel). Inflammatory pathways (monocytic activation) are also detected in somatizing disorder. SUMMARY: ‘Functional’ symptoms, as occurring in CFS and somatization, have a genuine organic cause, that is activation of peripheral and central IO&NS pathways and gut-derived inflammation. The development of new drugs, aimed at treating those disorders, should target these IO&NS pathways.

PMID: 19127706 [PubMed - in process]

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Chronic fatigue syndrome (CFS) and mitochondrial dysfunction

February 8, 2009

Major development:  Myhill et al paper on mitochondrial dysfunction in CFS

Dr. Sarah Myhill and coauthors have just published a paper on mitochondrial dysfunction in CFS. They found that there is indeed mito dysfunction in CFS, and that the degree of this dysfunction is correlated with the degree of disability of PWCs. A pdf of the paper is available here free:
http://www.ijcem.com/files/IJCEM812001.pdf

In my opinion, this is a landmark development in CFS research. It shows that the fatigue in CFS is traceable to problems in the basic powerplants of the cells of the body. This should draw the attention of the CFS research community to the fundamental biochemistry of metabolism, and it should also be a powerful bulwark against the view that CFS is a psychiatric disorder, which seems to be particularly dominant in the UK, where, ironically, the work described in this paper was done.

The next step is to establish what is causing the mito dysfunction in CFS. There are some competing ideas about this among Dr. Cheney, Professor Pall, myself, and others, and hopefully we will be able to shake them down and see which one or ones hold up to scrutiny soon.

As many of you know, my view is that the mito dysfunction is caused by glutathione depletion in the mitochondria, and I believe that this leads to the whole range of problems that Dr. MacLaren Howard, one of the authors of this paper, has found in the mitochondria of PWCs with his lab testing, now at Acumen Lab in the UK.

There is now good evidence that treating to correct the partial block in the methylation cycle will raise the glutathione levels in CFS, as it does in autism, and recently we (and I) have been hearing from a small number of PWCs who report that after methylation cycle block treatment their energy levels are coming back up, and some have been able to return to work. This can take many months, but it is definitely happening, at least in a few cases so far. We need many more cases to draw conclusions about this, but so far, so good.

It is rare that a really worthwhile paper about CFS research comes out, and in my opinion, this is one of those rare moments!

Rich Van Konynenburg, Ph.D.

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Black mold

June 25, 2008

In a New Scientist article, in response to a question regarding “dreaded black mold”, we read the following from Brian Flannigan, Department of Biological Sciences, Heriot-Watt University, Edinburgh, UK. Previous responses addressed Aspergillus Niger, considered “a major source of allergenic disease in that it produces carcinogenic aerosols”.

“The most common dark molds in growths on bathroom and other damp walls are likely to be species of Cladosporium, with Aureobasidium, Phoma, and Ulocladium thrown in for good measure. Even green species of Aspergillus and Penicillium can look black when soaked.

The situation is much the same in mainland Europe, so it is likely that it will not be very different in Northumberland or Surrey, unless the bathrooms there come closer than most British bathrooms to providing the subtropical and tropical climates that favor A. Niger.

A really black fungus is about 15 percent of houses in Scotland with mold problems is Stachybotrys aira. Wallpaper, jute carpet backing, and the cardboard wrapper of gypsum board all provide ideal cellulosic substrates on which it may thrive in damp conditions. This type of mold may present the greatest hazard of any to the health of occupants of moldy buildings. Its airborne spores are allergenic and powerfully toxigenic. Its toxins inhibit protein synthesis, and are immunosuppressive, an irritant, and hemorrhagic.

It is well known that fodder contaminated by Stachybotrys can kill horses, and it is also harmful to the stable hands. Currently, this mold is of particular concern in North America, where it has been implicated in episodes of building-related illness ranging from chronic fatigue syndrome in adults to fatal pulmonary hemosiderosis in infants. Consequently it has been the subject of lawsuits (one for the sum of $40 million) against builders and employers.”

Recommendation: if you see black mold, call a professional. Have it sampled, have it tested, have it dealt with – all under containment. When it comes to mold, black=bad, and it could be deadly.

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