Positive Health Online

Readers of Positive Health may be aware that in August 2007, the National Institute for Health and Clinical Excellence (NICE) will be publishing guidelines on the management of chronic fatigue syndrome and myalgic encephalomyelitis (CFS/ME). Draft guidelines were published for consultation in September of last year, with the intention that the final version would be published in April. However, such was the universal condemnation with which the draft was received in all parts of the ME community, that publication was delayed until August. It is rare indeed for patients’ organisations, clinicians and researchers to manifest such unanimity of opinion, so it is clear that the draft was deeply flawed. It is less clear, though, that the criticisms will be taken on board in producing the definitive version of the guidelines. A cynic may well feel that the publication of the guidelines in August, at the height of the ‘silly season’ when many people are on holiday, with no further opportunity for consultation, is deliberately timed in order to minimize expressions of concern from the ME community.

This is very serious. NICE guidelines are binding on the NHS, and it is impossible for NHS agencies to disregard them. If the final version is anything like the draft, its effect will be to limit substantially the range of treatment options available to people with ME through the NHS, and to impose on them treatments which many regard as being of very doubtful value, and which in some cases appear to be damaging.

It may be helpful to summarize how this situation has come about, and what the specific concerns about the draft guidelines were. The role of NICE is to review the evidence base regarding specific clinical conditions, and to develop evidence-based guidelines for their management. However, it is widely agreed that the evidence base pertaining to ME is inadequate, and the belief that evidence-based guidelines can be constructed on such an inadequate evidence base is misguided. Indeed, many of the recommendations in the draft guidelines appear not to be evidence-based at all. The scientific study of CFS/ME is a rapidly developing field where little is known at present, but in which a great deal is likely to be learned in the next few years. The current draft guidelines largely reflect what limited research was carried out in the 1990s and before. If promulgated, even if subject to subsequent review, the guidelines are likely to be in force for at least five years.

The draft stated that, on the basis of reports of clinical trials, cognitive behaviour therapy (CBT) and graded exercise therapy (GET) should be the treatment of choice for most patients. It failed to take into account the fact that there has been very little clinical trial activity involving other treatments or management approaches. It fails also to point out that all the published results of clinical trials of CBT and GET concern groups of subjects who were not appear representative of the population with ME as a whole. Many of these studies are methodologically flawed, and it is not possible to draw general conclusions from them about the treatment of all people with ME, including for example people with severe disease, in whom these approaches to therapy have never been evaluated by clinical trial.

The document makes the familiar confusion of lack of evidence of effect with evidence of lack of effect in stating, for example: “…there is no evidence for the following strategies ...” (i.e. those encouraging either activity at levels substantially less than full capacity or complete rest), and also: “There is no evidence on the use of supplements for adults and children with CFS/ME…” However, in stating this, the draft guidelines fail to distinguish between interventions and management strategies the outcomes of which have been  studied, but with negative or equivocal results, and those which have not been studied at all. Thus we have the familiar confusion between lack of evidence and evidence of lack of effect. NICE should indicate clearly which interventions come into which category.

The draft guidelines were premature, and some of the recommendations were wrong in principle. Guidance which ensures equitable and effective care for all people with ME, irrespective of who or where they are, would be a major advance, but the draft does not constitute such guidance. Instead, it creates a serious risk of being set in tablets of stone, so that for some years the treatment of people with ME in the NHS will be based upon it. It would be much better if the exercise were to be deferred for three or years, so that really important research currently being undertaken could be published and included in the NICE review, thereby enabling patients to benefit from new therapeutic developments, rather than being forced to accept inadequate and inappropriate treatment for some years to come.

Sadly, many have been led to believe that early cancer screening will save their lives; nothing could be further from the truth. In fact biopsies often are instrumental in seeding the cancer elsewhere in the body. Thus accelerating cancer growth (metastasis) that was once contained by body and may have been slow progressing as is often the case. Clearly this is very dangerous, yet most will subject themselves willy-nilly to this procedure in the misguided faith in the early detection myth.

Any advantage one gets from early detection has now become a liability as cancer growth rate has accelerated, often to the point that the patient has now become an emergency case.

Oncologists know this yet they don’t tell you that a biopsy can cause the cancer to start spreading, hence their concern for urgency to start treatment. This leaves no time to review newer or alternative options even if they exist. Not to mention the all too often tragedy should an error (which are quite high) cause a false negative, thus unknowingly leave the patient in a highly susceptible condition.

“Meanwhile, (the medical community continues to pretend as if they have a safe and effective cure and see no problem with this state of affairs. In fact this pretentious shell game is often supported by totally self serving definitions of 5 year survival cure rate and a 28 day non tumour growth as remission. These absurd definitions are neither a cure or a remission! [CG] the ‘proven’ methods of toxic chemotherapy, carcinogenic radiotherapy, and surgery are a failure for the majority of patients. The death rates from the six major killer cancers: cancers of the lung, colon, breast, prostate, pancreas, and ovary-have either stayed the same or increased during the past sixty years. The American Cancer Society’s publicity staff knows that people will not give money to a hopeless cause, so it regularly announces ‘breakthroughs’, talks about ‘winning’ the ‘war on cancer’, and inflates the statistics. “The Society also fails to tell us that the ‘improved’ survival rate seen over the past 80 years …is largely the result of earlier detection-not more effective treatment,” explains John McDougall MD. “Finding the cancer earlier does allow more people to live 5 years after the time of diagnosis. Thus, more people will fit the definition of ‘cured.’ However, in most cases, early detection does not increase a person’s life span but only the length of time a person is aware that he or she has cancer.”[1]

The more sensible treatments are continually suppressed and/or avoided. In 1946 Dr Max Gerson clearly demonstrated to the US congress on how to literally cure cancer with nutrition alone! And this with almost exclusively terminal cases. In fact this incredible feat which continues to this day was further suppressed in 1953, United States Senate investigation into the cancer industry, which concluded that the AMA, NCI, and FDA had entered into a conspiracy to promote radiation, chemotherapy, and surgery while suppressing alternative cancer therapies that were highly praised by the cured patients themselves. Attorney Benedict Fitzgerald of the United States Justice Department, who led the investigation, called for a full-scale probe to expose the lethal bureaucracy thwarting advances in cancer treatment and research. For this he was fired.

“The same lethal bureaucracy is alive and well today, as can be seen from a 300-page report on alternative cancer therapies released in September 1990 by the Office of Technology Assessment (OTA). Heavily slanted toward negative pre-conclusions, the report, titled Unconventional Cancer Treatments, dismisses any positive data in support of alternative therapies as “anecdotal” but presents negative data as “proof” that the therapies are worthless. Important clinical studies and documented case material attesting to the effectiveness of specific therapies are either totally ignored or dismissed as “unacceptable” or minimized. The thousands of human beings with advanced cancer who were cured by alternative methods do not exist in the report except as fleeting statistics, grudgingly mentioned. The misleading, sanitized OTA report, which cost well over half a million dollars in taxpayers’ money, is “a mostly meaningless mishmash of misinformation,” wrote Michael Culbert, who appeared before two of the OTA advisory meetings, in an article in the Winter 1990 issue of The Choice. Nevertheless, buried within the OTA report are over 180 positive medical and scientific studies supporting the efficacy of alternative therapies. And Roger Herdman MD, OTA Assistant Director, said the report urges researchers “to take a sympathetic and thoughtful look at some of these treatments.” Yet, when the OTA in late 1990 recommended that the National Cancer Institute devote a tiny part of its research budget to alternative treatments, the NCI was incredulous and rejected every one of OTA’s recommendations, as Z Magazine reported in June 1991. In other words, it’s business as usual at NCI and ACS. About 10,000 American cancer victims will continue to die on schedule every week. And the “unproven” alternative methods will continue to be condemned and banished without a fair evaluation.”[2]

“A new generation of screening tests which pick up small, latent and benign cancers could cause a life-time of anxiety and decision-making on whether to have radical surgery, says Bruce Ponder, head of Cancer Research UK Cambridge Research Institute, at Cambridge University. He said we need better tests to differentiate between harmful and non-spreading tumours. He warned “You have to be careful not to do more harm than good…”

“…Men were unnecessarily having prostates removed at the first diagnosis of abnormal cells despite evidence that many would live healthy lives for years, he said. Prostate cancer tests are not routinely available on the NHS to all men but are increasingly offered by private clinics.”[3]
Lung Cancer Tests Fail
Smokers who get CT scans to detect lung cancer early may die at the same rate as those who receive no screening, according to a new study from one of the world’s most prestigious cancer facilities.[4]

In results that baffled study authors, smokers who underwent annual computed tomography (CT) imaging were diagnosed with cancer more than three times as often as their unscreened counterparts, but died in almost the same numbers.

A report on Canadian cancer statistics estimated that 22,700 Canadians would be diagnosed with lung cancer and 19,200 would die of the disease in 2006.

The study, conducted by researchers at New York’s Memorial Sloan-Kettering Cancer Center, were published yesterday in the Journal of the American Medical Association.

“We’re fumbling for an explanation for results that are surprising,” says Colin Begg, head of Epidemiology at Sloan-Kettering and the senior author.

The research casts doubt on a widely publicized 2006 study in the New England Journal of Medicine that suggested current and former smokers could greatly increase their chances of survival with early detection from CT scans.

But Begg says those results aren’t reflected in his research and that early detection – long the gold standard in cancer treatment – might apply to breast and uterine cancers, but not to aggressive lung cancer.

Three decades ago similar studies using X-rays produced the same results, says Begg, even though CT scans can detect cancerous nodules in the lung that are one centimetre in diameter or less and can see cancers lurking anywhere in the body.

The Sloan-Kettering research involved 3,246 current and former smokers at three medical centres – two in the US and one in Italy – who received annual CT scans before they had any lung cancer symptoms.

While the study found 10 times more people from the screened groups underwent lung cancer surgery than those in a similar sized group from the general population, it showed virtually the same number of people – 38 in the scanned group versus 38.8 in the statistical group – died of the ailment.

“The only logical explanation is that there are lots of slow growing tumours in the population which we don’t normally find and just never reach the clinical stage,” says Begg.

On the other hand, Begg says aggressive lung cancers grow so fast and are so malignant that they can take a firm hold in the year between CT scans.

Begg says larger research projects might show that there is a mortality benefit from CT screening and that several ongoing studies could provide more definitive evidence of screening benefits.

One of those is being conducted in part at Toronto’s Princess Margaret Hospital, where the lead researcher is confident that early CT scan detection will prove beneficial.

Dr Heidi Roberts, a radiologist at Princess Margaret, says the current study looked at mortality over fewer than five years of screening and that longer studies could show much larger mortality reductions.

“More people die early on (in screening programs) because you are getting more of the advanced cancers,” says Roberts, whose study is part of the International Early Lung Cancer Action Program. “They haven’t observed long enough. Screening really has the possibility to save lives,” she says.

The Toronto study has conducted some 3,200 CT scans since 2004 at the University Ave. hospital, detecting about 45 confirmed cancers to date.

One of those patients was Toronto’s Elsa Poitras, 60, who was a smoker for 20 years. As soon as she entered the early screening program in 2005 a small tumour was found on her lung.

“I believe 100 per cent that (the CT scan) saved my life,” says Poitras, a mammography technologist at a Markham clinic.

“The problem with lung cancer is often… you don’t really get warning symptoms until it’s too late. I had a two centimetre tumour in my chest and I had no symptoms, no cough, no shortness of breath,” Poitras said.
Roberts says most people who have their cancers detected early can be operated on with minimally invasive techniques and require no chemotherapy or radiation.

Surgeries for later stage lung cancer require the removal of much or all of a lung and many people die from the operations themselves.

1.    John McDougall MD. The Misguided War on Cancer. Vegetarian Times. September 1986.
2.    Richard Walters. Options: The Alternative Cancer Therapy Book. Avery.  1992.
3.     Polly Curtis. New Cancer Tests Could Do More Harm Than Good, Says Specialist. The Guardian. April 3, 2007.
4.    Joseph Hall. Cancer Screening Fails Test. TheStar.com – News. March 07, 2007.

Source: Chris Gupta
chrisgupta@alumni.uwaterloo.ca
www.newmediaexplorer.org/chris/