Multiple Chemical Sensitivity caused by hypersensitivity of the brain
Written by Matthew Hogg BSc (Hons)
Thursday, 19 April 2012 11:54
New research into multiple chemical sensitivity shows that the brains of sufferers respond more easily and more strongly to stimuli than those of healthy individuals, supporting the 'central sensitization' theory as an explanation for the illness.
Multiple Chemical Sensitivity (MCS) is a chronic condition in which those affected experience an array of non-specific symptoms including headaches, fatigue, weakness, dizziness, cognitive dysfunction, and a general feeling of being unwell, when exposed to minute amounts of chemical triggers such as synthetic fragrances and industrial pollution.
The few scientists and physicians who have been actively investigating this disabling and increasingly common condition over the past few decades have long suspected that an initial sensitization of the brain might result in neurons subsequently firing when exposed to levels of stimuli that would normally be ignored. This would translate into someone affected by MCS having an unusually high level of brain activity when exposed to triggering chemicals and experiencing a host of neurologically-based symptoms such as those mentioned previously.
Now, investigators from The Danish Research Centre for Chemical Sensitivities at Copenhagen University Hospital, Denmark, have shown this is indeed the case by comparing MCS patients to healthy volunteers using a comprehensive set of measures, referred to inclusively as quantitative sensory testing (QST), to assess brain sensitivity and activity.
The study involved 15 MCS patients without any comorbid overlapping condition (e.g. fibromyalgia, chronic fatigue syndrome) and 15 healthy individuals matched for factors such as sex and age.
The researchers used injections of capsaicin as a stimulatory challenge in order to study the responses of all participants, both those who suffered from MCS and those who didn't. Capsaicin is a chemical found in chili peppers that is an irritant and is responsible for the sensations of burning, and even pain, experienced when spicy foods are consumed.
Other stimuli such as pressure and heat were also used to measure pain thresholds in all participants.
It was found that MCS patients experienced a significantly greater degree of pain as a result of the capsaicin challenge compared to their healthy counterparts.
Several other measures were also consistently higher in the MCS patients although no difference in pain thresholds for pressure or heat were found.
The investigators concluded that: "Increased capsaicin-induced secondary punctate hyperalgesia was demonstrated in MCS patients without comorbid, overlapping disorders, suggesting facilitated central sensitization in MCS."
Essentially what they are saying here is that MCS patients' brains are more active than those of healthy individuals when exposed to external stimuli. Their study therefore validates MCS as a genuine physical illness and points to hypersensitivity of the brain to chemicals as the major mechanism behind symptoms experienced.
Source: Tran MT Arendt-Nielsen L Kupers R Elberling J (2012) Multiple chemical sensitivity: On the scent of central sensitization International Journal of Hygiene and Environmental Health http://dx.doi.org/10.1016/j.ijheh.2012.02.010
via Matthew Smith At Indigo Jo Blogs
15th April, 2012 Indigo Jo
Recently the ME community online had to deal with the sad news of three deaths, including one of its best-known and most loved activists, Emily Collingridge (right). There were also two inquests which reported in the last couple of months, those of Lois Owen who died in 2009 and Victoria Webster who died last year. All had very severe ME and, it appears, died of its complications (the immediate cause of Emily’s death will not be known until the inquest is heard later in the year). A major cause of Emily’s final deterioration was a hospital admission in late 2009, following a period in which her condition had improved somewhat; the environment in the hospital was clearly very unsuited to someone who was highly sensitive to light and sound and needed a low-stimulation environment. A further problem with British hospitals has to do with the medical and nursing professions: the fact that there is a substantial number of people with in it who are uncaring, dismissive or abusive and it has led to many people with chronic illnesses becoming fearful or even phobic of hospitals. This simply should not be the case.
Last year, there was a book published by Jessica Kingsley Publishers titled How We Treat the Sick by Michael Mandelstam, which exposed abuse and malpractice in British hospitals. It was an excellent exposé of how hospitals treated elderly patients with a little bit of content related to younger disabled people, but it does not cover the NHS’s treatment of the chronically ill very much if at all. The journalist Christina Patterson has had a series of articles (, , , , ) published in the Independent this past week, her interest in the subject having been sparked by receiving inadequate care from nurses after treatment for cancer, which she spoke about in a Radio 4 broadcast. She concentrates on the quality of nursing and on what can be done to improve it, but also does not cover those who are subject to repeated, sometimes lengthy, hospitalisations, who see a variety of qualities of care depending on when they are admitted and in what circumstances.
I became interested in this as a result of hearing the story about Lynn Gilderdale in 2010; she had suffered from very severe ME (myalgic encephalomyelitis) from 1992 until her death by morphine overdose in 2008. She was entirely bedridden, was unable to speak or swallow, was in terrible pain (hence the morphine) and suffered persistent nausea, had osteoporosis and various endocrine disorders, and also had a drastically impaired memory, although this improved in the last five years or so. She required between 50 and 60 admissions to hospital, during which her mother remained with her, partly because she was terrified of hospitals as a result of traumatic, abusive experiences during two admissions in mid-1992, and partly because her mother needed to interpret the hand-signs she used to communicate (patients, including adults, often need a relative with them when in hospital for interpretation or advocacy purposes, but some staff fail to understand or accept this, as a senior nurse in Cambridge demonstrated very brutally to someone I know the night before I wrote this).
The main problem for Lynn, and many other severely-affected ME patients, was the widespread view in the medical profession that ME did not exist, or was a misnomer for a psychological or behavioural disorder, or was at worst a mild fatigue syndrome which could not possibly be as severe as Lynn’s condition. A well-known ME specialist diagnosed her with “hysteria” and handed her over to a psychiatrist, saying he had never seen anyone that ill or anyone fitting like Lynn did; a consultant on a psychiatric ward at Guy’s hospital lied to the Gilderdales that he believed ME was a physical disease, but did nothing to treat it and allowed Lynn to be abused by patients and staff. There were serious failures on subsequent occasions when she was admitted, including one where a surgeon who had performed a Hickman line replacement did not believe her when she indicated that she was in distress after the procedure; it turned out he had punctured her lung, turning what should have been a minor procedure into a life-threatening emergency which put her on life support, and resulted in a three-month hospital stay. On another occasion, who was immune-compromised and very sensitive to light and sound, was refused a side room because “protocol had changed” and had to stay on a main ward during an outbreak of a vomiting and diarrhoea bug.
Lynn was not alone in suffering such appalling treatment, and ME is not the only condition whose sufferers are affected in this way. The most vulnerable are those with rare or poorly-understood chronic conditions or those with controversies attached to them, like ME. While being wary or afraid is hospitals is not uncommon (they are, after all, places where people die), an awful lot of people with chronic disabling conditions have had repeated traumatic experiences and are afraid or even phobic of hospitals. I have a number of acquaintances with the connective tissue disorder Ehlers-Danlos syndrome (EDS), also known as Hypermobility Syndrome, the most obvious symptom of which is weak, hypermobile joints which dislocate easily. The most severely affected require full-time wheelchair use, tube feeding due to gastroparesis, and sometimes mechanical ventilation; some have lost their ability to speak and others have developed paralysis because a collapsing spine injures their spinal cord. A great many of those I know had difficulty getting diagnosed, and a long period in which many doctors suggested that their problems were “in their heads” and treated them with disdain and disbelief led to a permanent fear of hospitals, often leading to a dangerous reluctance to go to hospital, or stay there, in critical situations; the misdiagnosis can also lead to critical situations that would not otherwise have happened. A friend of mine recently wrote an article about her 13-year-long struggle to get her condition (which turned out to be EDS) recognised, during which she was referred to a team in London which is notorious for promoting psychological explanations for demonstrable physical conditions, and told to ignore her symptoms and not to associate with disabled people online or in person as it would make it look like she was “learning to be disabled”. She also noted that many doctors did not understand the difference between genuine conversion disorder (which the patient has no control over) and malingering.
Any campaign to improve nursing care and conditions in hospital is incomplete if it does not mention the terrible toll it takes on people with rare and chronic conditions. People have died, people have had their health permanently ruined, others have acted in ways that harmed themselves because of wrong advice or fear of doctors, nurses or hospitals, and others have committed suicide, wholly or partly because of trauma from medical abuse. The people who are campaigning on NHS standards should talk to some of the people affected by this and include it in their campaign. The charities concerned with these conditions, such as the ME Association and Hypermobility Syndrome Association, should also make campaigning for improved hospital conditions and against abuse a major priority. Major demands of the campaign should include:
Hospitals, clinics and other medical facilities should be fear-free for patients as far as the behaviour of the staff is concerned — the kind of behaviour my friends tell me they have witnessed from doctors and nurses (and members of related professions, including a particularly unpleasant tale one of my friends told me about an optician) would get a minimum-wage shop assistant sacked. There must be no excuse for highly-paid professionals to behave in a way that would be unacceptable for a much less skilled, and less well-paid, worker. There needs to be a concerted campaign for fear-free healthcare, care that does not worsen anyone’s condition and does not leave people who will need to use the health services on a regular basis traumatised and fearful to do so.
- Appropriate units for patients whose conditions require a low-stimulation environment, whether in terms of noise, light, chemicals or anything else. This should include separate units in major hospitals; such patients should have priority for side rooms in others.
- Less credence should be given to psychological explanations for physical symptoms when a particular group of doctors cannot explain them; a diagnosis of hysteria or conversion disorder could lead to prejudice against them whatever they present with in the future.
- Patients’ knowledge of their condition, and of what works and what does not in their experience, must be respected.
- Staff should act rationally and not capriciously, share relevant information with each other and not act against each other, such that a decision taken by one team should not be countermanded by another with an excuse like “Dr so-and-so is not here now”.
- Patients should have the right to have a relative stay with them if necessary.
- Charities should act in the interests of those they purport to represent, and not endorse harmful advice from “on high” or useless research
- Medical students must be educated about “rare” disorders like EDS, such that they could spot it, even if they lack the resources to treat it (or its complications) adequately. This is vital to ensure that, for example, parents do not face wrongful accusations of harming their children when they present with injuries or other complications from the condition.
- There must be a robust complaints procedure so that staff who lie to patients or their guardians or are cruel or dismissive are subject to appropriate sanction, or dismissed
- Medical and nursing students must be educated about the rights of their patients to be treated with respect, believed about their symptoms and concerns, not subject to cruelty of any kind, and not made to fear hospitals, medical staff or medical treatment in the future.
- All the demands related to improving care for the elderly and others with disabilities, such as those related to toileting and feeding, apply to this group of patients equally.
“Fear-free Healthcare” was originally published on Indigo Jo Blogs — http://www.blogistan.co.uk/blog/ — on 15th April 2012. Republished from Indigo Jo Blogs with permission from Matthew J Smith, author. All rights reserved.
Unstable at the Core? New Study Looks at ‘Genomic Instability’
via Phoenix Rising
The new National CFIDS Foundation study will determine if something called ‘genomic instability’ contributes to chronic fatigue syndrome. Dr. Henry Heng found surprisingly high levels of significant chromosome alterations in a set of Gulf War Syndrome patients and now he’ll be looking in ME/CFS patients. Get the scoop on this intriguing research in this Phoenix Rising blog.
BMC Med Educ. 2012 Apr 3;12(1):19. [Epub ahead of print]Do you think it’s a disease? A survey of medical students. Erueti C, Glasziou P, Del Mar C, Van Driel ML.
Almost 200 medical students at Bond University in Australia were polled as to whether chronic fatigue syndrome is a disease or not. (Disease: “an unhealthy state of body or mind: a disorder, illness or ailment with distinctive symptoms, caused eg by infection”)
Surprisingly 75% of them thought it was a disease. That was in contrast to a study which found that 21% of doctors thought ME/CFS was all in the patients head, 29% who weren’t sure and 50% who disagreed with that statement. Interestingly, the authors noted that 30 years ago there was controversy over whether depression was a disease. Maybe the next group of physicians and researchers will be a bit more enlightened than than the last.
This is a fantastic analogy I refer people to when they wish to understand my limitations from ME/CFS. It's a story written by Christine Miserandino called 'The Spoon Theory', based on her experience of explaining what it's like to live with Lupus to a close friend. Granted, some of us may have less 'spoons', smaller 'spoons', or 'spoons' of different shapes, but the analogy still applies to everyone with ME/CFS and really gets the point across!http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Many ME/CFS patients choose to take SSRIs for depression, anxiety or pain, or are put on them automatically upon hospital admission. When I was first hospitalized, I found over 60% of patients were on Celexa! I was told it was very safe, and though I was not depressed consented to taking it because I didn't want my refusal to result in expulsion from the hospital care I needed. We are all familiar with the increase suicide rates among people taking SSRI's, but here are some other potential side effects. I've seen SSRI's really help people with ME/CFS, but I also suspect there's a lot of us on them that don't need to be.-Priya
By Dr. Mercola
Depression is a pervasive health issue today. According to data from the U.S. Centers for Disease Control and Prevention (CDC), one in 10 American adults report some form of depression.i
Eleven percent of the U.S. population over the age of 12 is on antidepressant medication.ii
However, mounting evidence shows the drug approach is not helping this trend. On the contrary, it may be fueling it...
At best, beneficial results from antidepressants are comparable to placebos, and at worst, they can cause devastating side effects, including suicidal- and homicidal tendencies, and deterioration into more serious mental illness.
Meanwhile, research has shown there ARE effective treatments for depression.
The problem is, they're not drugs, so there's no way to make a profit on them...
And that may be why you don't normally hear about these strategies.
I will list them at the end of this article, and by the time you've reviewed the many side effects of these drugs, which is the main topic of this article, you will hopefully be motivated to give those drug-free alternatives a try.
Antidepressants and Heart Disease
Antidepressant use has been linked to thicker arteries, which could contribute to the risk of heart disease and stroke. This is in addition to the already heightened risk for heart disease that accompanies depression.
The results of a study of 513 twin veterans, presented at the American College of Cardiology meeting in New Orleans last year,iii found that antidepressant use resulted in greater carotid intima-media thickness (the lining of the main arteries in your neck that feed blood to your brain). The researchers found that the intima-media thickness of the men taking antidepressants was about five percent thicker than that of those who were not using the drugs.
This was true both for selective serotonin reuptake inhibitors (SSRIs) and antidepressants that affect other brain chemicals, so while the researchers speculate that the vascular changes may be due to changes in serotonin, the underlying cause is still undetermined.
According to Emory Universityiv:
"Antidepressants' effects on blood vessels may come from changes in serotonin, a chemical that helps some brain cells communicate but also functions outside the brain... Most of the serotonin in the body is found outside the brain, especially in the intestines... In addition, serotonin is stored by platelets, the cells that promote blood clotting, and is released when they bind to a clot. However, serotonin's effects on blood vessels are complex and act in multiple ways. It can either constrict or relax blood vessels, depending on whether the vessels are damaged or not."
This isn't the first time the issue of serious heart-related effects of antidepressants has been raised. For example, in August of last year, the U.S. Food and Drug Administration (FDA) issued a safety alert on the antidepressant Celexav, warning it can cause abnormal changes in the electrical activity of your heart, which can lead to abnormal heart rhythm and fatal heart attacks. Celexa is part of the class of antidepressants called serotonin reuptake inhibitors (SSRIs).
People with underlying heart conditions and low potassium and magnesium levels in their blood are particularly at risk for this, and the drug should no longer be used at doses greater than 40 mg per day, the FDA said. While the drug's label indicates that "certain patients may require a dose of 60 mg per day," studies have shown that there's no benefit in the treatment of depression with doses higher than 40 mg, the FDA added.
Antidepressants Also Increase Your Risk of Stroke and Sudden Cardiac Death
Newer antidepressants also raise your risk of bleeding and stroke, according to a recent report in Pulse Today which cites a brand new study published in the BMJ on April 3:
"GPs should consider carefully the increased risk of bleeding and stroke with newer antidepressants before prescribing them, say US researchers. Their study looked at the records of 36,000 patients with a diagnosis of major depression taking serotonin transporter inhibitors (SSRIs) as monotherapy, and the frequency of bleeding complications over 19 years. SSRIs were categorised into 'high', 'moderate' or 'low' affinity for the serotonin transporter and patients with multiple prescriptions and those on tricyclic antidepressants or monoamine oxidase inhibitors were excluded.
Over 600 bleeds were observed in the 21,000 patients in the high-affinity group, compared with 333 among the 15,000 patients in the low affinity group, and this equated to a risk ratio of 1.17. Stroke risk was also elevated in the high affinity group compared with the low affinity group, with a risk ratio of 1.18."
Another large study of women who have been through menopause found that those taking tricyclic antidepressants and SSRIs were 45 percent more likely to suffer a fatal strokevi. The findings came from an analysis that involved 136,000 women between the age of 50 and 79. Comparisons were made between the women who had been prescribed antidepressants since being enrolled in the research, and those who had not. The research also found that overall death rates were 32 percent higher in women on the drugs.
According to one theory, this tragic effect may be due to how the drugs affect blood clotting. Antipsychotics are even more problematic and should be used with strict caution. A review of the medical literature from 2000-2007, published in Expert Opinion on Drug Safety in 2008,vii found that:
"Antipsychotics can increase cardiac risk even at low doses, whereas antidepressants do it generally at high doses or in the setting of drug combinations."
Another study published in January 2009 in the New England Journal of Medicineviii also found that antipsychotic drugs doubled the risk of sudden cardiac death. Mortality was found to be dose-dependent, so those taking higher doses were at increased risk of a lethal cardiac event.
Other Well-Documented Side Effects
The interactions of antidepressants on your brain, liver, digestive system and other systems are still not fully understood, but we do know that the side effects are numerous, and many are quite serious, as the studies above can attest to. Aside from potentially lethal cardiac events, other serious side effects include:
Two Side Effects Your Doctor Likely Won't Tell You About
- Suicidal thoughts and feelings and violent behavior: The primary side effect that you should be concerned about is that SSRI's can actually DOUBLE your risk of suicide.
- Diabetes: Your risk for type 2 diabetes is two to three times higher if you take antidepressants, according to one study. All types of antidepressants, including tricyclic and SSRIs, increase type 2 diabetes risk.
- Problems with your immune system: SSRIs cause serotonin to remain in your nerve junctions longer, interfering with immune cell signaling and T cell growth.
- Stillbirths: A Canadian study of almost 5,000 mothers found that women on SSRIs were twice as likely to have a stillbirth, and almost twice as likely to have a premature or low birth weight baby; another study showed a 40 percent increased risk for birth defects, such as cleft palate.
- Brittle bones: One study showed women on antidepressants have a 30 percent higher risk of spinal fracture and a 20 percent high risk for all other fractures. This is because serotonin is also involved in the physiology of bone. If you alter serotonin levels with a drug, it can result in low bone density, boosting fracture risk.
Aside from everything mentioned so far, there are two additional side effects or risks that really need to be addressed, and that everybody should be thinking about. These show up in the scientific literature, but are rarely discussed. Medical journalist and Pulitzer Prize nominee Robert Whitaker brought these issues to my attention during a 2010 interview. (If you missed it, I highly recommend listening to it nowix as he discusses numerous other areas of confusion and shares many additional facts about the treatments for depression.)
Download Interview Transcript
Whitaker's research shows that as many as half of all children placed on an antidepressant for five years will convert to bipolar illness! About 25 percent of adult long-term users convert from unipolar depression to bipolar. This is a very serious concern, not just for each affected individual and their family, but even for society as a whole. As Whitaker explains:
- The first risk is that you'll convert from unipolar depression to bipolar depression.
- The second risk is that with long-term use, antidepressants are associated with cognitive decline.
"When you convert from depression to bipolar, now you're in a category where you're often treated with a cocktail of medications including an antipsychotic medication, and long-term bipolar outcomes are really problematic in this country. Only about 35 percent of bipolar patients are employed. So you see this risk of [permanent] disability.
So, when you go on an antidepressant, you have a risk of having a manic episode and... becoming "a bipolar patient," and at that moment you're into a much more long-term problematic disorder that does not have a good outcome today."
Key Factors to Overcoming Depression
Your diet and general lifestyle are clearly parts of the "root" that must be healed if you want to resolve your mental health issues, because your body and mind are closely interrelated. Depression is indeed a very serious condition; however it is not a "disease." Rather, it's a sign that your body and your life are out of balance. This is so important to remember, because as soon as you start to view depression as an "illness," you think you need to take a drug to fix it.
In reality, you may need to find a way to return balance to your body and your life. Fortunately, research confirms that there are safe and effective ways to address depression that do not involve unsafe drugs, including:
Important Concluding Thoughts - Please Read!
- Dramatically decrease your consumption of sugar (particularly fructose), grains, and processed foods. (In addition to being high in sugar and grains, processed foods also contain a variety of additives that can affect your brain function and mental state, especially MSG, and artificial sweeteners such as aspartame.) There's a great book on this subject, The Sugar Blues, written by William Dufty more than 30 years ago, that delves into the topic of sugar and mental health in great detail.
- Increase consumption of probiotic foods, such as fermented vegetables and kefir, to promote healthy gut flora. Mounting evidence tells us that having a healthy gut is profoundly important for both physical- and mental health, and the latter can be severely impacted by an imbalance of intestinal bacteria.
- Get adequate vitamin B12. Vitamin B12 deficiency can contribute to depression and affects one in four people.
- Optimize your vitamin D levels, ideally through regular sun exposure. Vitamin D is very important for your mood. In one study, people with the lowest levels of vitamin D were found to be 11 times more prone to be depressed than those who had normal levelsx. The best way to get vitamin D is through exposure to SUNSHINE, not swallowing a tablet. Remember, SAD (Seasonal Affective Disorder) is a type of depression that we know is related to sunshine deficiency, so it would make sense that the perfect way to optimize your vitamin D is through sun exposure, or a safe tanning bed if you don't have regular access to the sun.
- Get plenty of animal-based omega-3 fats. Many people don't realize that their brain is 60 percent fat, but not just any fat. It is DHA, an animal based omega-3 fat which, along with EPA, is crucial for good brain function and mental healthxi. Unfortunately, most people don't get enough from diet alone. Make sure you take a high-quality omega-3 fat, such as krill oil. Dr. Stoll, a Harvard psychiatrist, was one of the early leaders in compiling the evidence supporting the use of animal based omega-3 fats for the treatment of depression. He wrote an excellent book that details his experience in this area called The Omega-3 Connection.
- Evaluate your salt intake. Sodium deficiency actually creates symptoms that are very much like those of depression. Make sure you do NOT use processed salt (regular table salt), however. You'll want to use an all natural, unprocessed salt like Himalayan salt, which contains more than 80 different micronutrients.
- Get adequate daily exercise, which is one of the most effective strategies for preventing and overcoming depression. Studies on exercise as a treatment for depression have shown there is a strong correlation between improved mood and aerobic capacity. So there's a growing acceptance that the mind-body connection is very real, and that maintaining good physical health can significantly lower your risk of developing depression in the first place.
- Get adequate amounts of sleep. You can have the best diet and exercise program possible but if you aren't sleeping well you can easily become depressed. Sleep and depression are so intimately linked that a sleep disorder is actually part of the definition of the symptom complex that gives the label depression.
- I strongly believe that energy psychology is one of the most powerful tools for resolving emotional issues - specifically a technique called the Emotional Freedom Technique, or EFT. While anyone can learn to perform EFT on themselves, those who suffer from depression should see a qualified EFT therapist. A number of studies now confirm clinical results. For example, one 2009 studyxii of 16 institutionalized adolescent boys with histories of physical or psychological abuse showed substantially decreased intensity of traumatic memories after just ONE session of EFT. Another study involving 30 moderately to severely depressed college students showed significantly less depression than the control group when evaluated three weeks after receiving a total of four 90-minute EFT sessions.xiii
I want to make something abundantly clear before I leave you. I know firsthand that depression is devastating. It takes a toll on the healthiest of families and can destroy lifelong friendships. Few things are harder in life than watching someone you love lose their sense of joy, hope, and purpose in life, and wonder if they will ever find it again. And to not have anything within your power that can change things for them. You wonder if you will ever have your loved one "back" again.
It's impossible to impart the will to live to somebody who no longer possesses it. No amount of logic, reasoning, or reminders about all they have to live for will put a smile back on the face of a loved one masked by the black cloud of depression.
Oftentimes you cannot change your circumstances. You can, however, change your response to them. I encourage you to be balanced in your life. Don't ignore your body's warning signs that something needs to change. Sometimes people are so busy taking care of everybody else that they lose sight of themselves.
There are times when a prescription drug may help restore balance to your body. But it's unclear whether it is the drug providing benefits, or the unbelievable power of your mind that is convinced it is going to work.
If you have been personally affected by depression, my heart goes out to you.
A broken body can be easier to fix than a broken mind. Depression is real. It is my hope that you don't feel judged here, but that you are encouraged and inspired by those who have been there.
vi Antidepressant Use and Risk of Incident Cardiovascular Morbidity and Mortality Among Postmenopausal Women in the Women's Health Initiative Study, Archives of Internal Medicine December 14/28 2009;169(22):2128-2139
vii Sudden cardiac death secondary to antidepressant and antipsychotic drugs, Expert Opinion on Drug Safety, March 2008; 7(2):1081-194
viii Atypical antipsychotic drugs and the risk of sudden cardiac death, New England Journal of Medicine, January 15 2009;360(3):225-35
ix The MOST Effective Treatment for Depression Isn't Drugs... But You'll Never Hear That From Your Psychiatrist
x American Journal of Geriatric Psychiatry December 2006; 14(12): 1032-1040
xi Effects of Omega-3 Fatty Acids on Mental Health, Agency for Healthcare Research and Quality, Evidence Report/Technology Assessment: Number 116
xii Single Session Reduction of the Intensity of Traumatic Memories in Abused Adolescents: A Randomized Controlled Trial, Foundation for Epigenetic Medicine, Santa Rosa, California. Data was presented at the eleventh annual EP conference
xiii Brief Group Intervention Using EFT (Emotional Freedom Techniques) for Depression in College Students: A Randomized Controlled Trial, Data were presented as a poster session at the 12th International Energy Psychology Conference, San Diego, June 3-9, 2010
Greg Crowhurst RNLD, PgDIP, MA has been caring for his wife Linda, who has severe Myalgic Encephalomyelitis (ME) for the past 18 years. His book, based on their experiences, 'Care for Someone with Severe ME', has just been released. It's available to read on-line for free or to purchase for £2.99 at the following link: http://www.stonebird.co.uk/howtosevereme.html "If you want to know about the reality of ME, in all its aspects, if you want to understand the environment in which ME grows and its sufferers are persecuted, read this Handbook. Greg Crowhurst’s book is of immense value, it’s a holistic book, a total book which looks at ME from the focused pinpoint of the sufferer while rising above the immediate physical problem to reconnoitre the surrounding landscape." - Martin WalkerThank you Greg for raising awareness and providing help for those whose lives are touched by severe ME(/CFS)!
What to Do when Doctors Make You Feel Like a Hot Potato
by Lisa J Copen*
April 11, 2012
Lisa Copen is founder and director of RestMinistries.com, a nonprofit dedicated to practical and spiritual encouragement of persons around the globe who are coping with chronic illness or pain. Lisa, who lives with rheumatoid arthritis and fibromyalgia, pursues this mission with the help of many dedicated volunteers. This article is reproduced with kind permission from RestMinistries.com.**
Q&A: How Do I Get Doctors to Listen and Stop Passing Me to Another Doctor?
Q: Have you had the experience of one doctor passing you off to another, and that one to another, and no one really wanting to ‘own’ you as a patient?
For a while I have felt I was the ball in a game of ping pong between my general practitioner and a specialist, each telling me to see the other. Currently, as new issues develop, I have become a “hot potato.”
My question is, what do you do to get doctors to listen and stop passing the buck? I am looking for suggestions beyond basics of talking to doctors. (One thing I am finding helpful lately is to pray earnestly and specifically for the appointment and the agenda to discuss with that doctor. I am at least finding each appointment a little less frustrating, and maybe a little more helpful.) - M
A: Lisa Copen - Hi, M. Yes, this can be very frustrating and I think most patients have felt this way at one time or another. My suggestions would be to try the following:
1. Call the local organizations for your illness and ask them if they have a list of recommended specialists. If they don’t, you may tell them:
“I know you cannot recommend anyone, but off the record, do you hear good things about a specific doctor whose name you could pass along to me? Do you know of anyone I could ask?”
Also, ask online friends in your area who have your same illness if they have some suggestions.
2. Ask others in the medical field who they would recommend, such as any surgeons you see, physical therapists, counselors, nutritionists, etc.
3. Consider if gender makes a difference to you. For over 10 years, both my specialist and general doctor were women. I would gladly see a male physician, and have, but overall, I need someone who will:
• Listen well
• Not seem overwhelmed by side effects
4. For a general practitioner, ask anyone you respect who has had any kind of medical condition if she or he would mind sharing the name of their physician. Since my diagnosis of rheumatoid arthritis, I’ve always had doctors of internal medicine as my general practitioners.
You may also want to ask around your church and see if there is anyone in the medical profession who may be able to give you the name of a recommended physician.
5. When you call for your first appointment, explain that you would like at least 30 minutes to explain your condition, and ask some questions about how the doctor prefers to work with patients who have a chronic condition, when a specialist is also involved.
There are doctors who love challenging patients and thrive on figuring out odd symptoms; other doctors do not, or do not have the time. Look for doctors who enjoy the challenge.
6. If the doctor you are interested in seeing has a web site, read as much as you can about him/her in advance. Also, Google his name and look on review sites such as Yelp (www.Yelp.com). [or RateMDs.com]
7. Ask your new doctor where they want to fall in the hierarchy of your medical team.
For instance, when I got a new rheumatologist last year, I asked him if he wanted me to come to him with symptoms that were obvious side effects of the medications (like basic infections, coughs, yeast infections, etc.), and he said yes.
8. Do your best as a patient to help the doctors communicate.
• When you have lab tests ordered by one doctor, have them fax results to other doctors.
• If you have an MRI or eye exam, etc. what other doctors on your medical team would find this information helpful?
9. Ask yourself if you want to try alternative treatments or may wish to in the future.
It’s best to not hide this from your specialist, so if it’s important to you, you need a doctor who will support your endeavors to treat yourself for certain things.
10. If you have either a general practitioner you like or a specialist, ask them for a referral to the other kind of doctor.
Whom do they like to work with? This can be very helpful if the doctors already have established a working relationship, and if you have a specific illness, doctors have a preference many times for other specialists who understand your disease.
For example, my rheumatologist likes to send me to an eye specialist who understands rheumatoid arthritis and how it affects the eyes.
11. Ask each doctor some specific questions and then go over the answers with the other one so there is clear communication. Such as:
• If I get a cold or sore throat, etc. which doctor should I see?
• If I have side effects that need treatment, should I go to the doctor who prescribed the medication or …?”
• If I have an emergency with ____, whom should I contact at 3 AM?
• If I have a _____ issue, would you prefer I go to the ER or Urgent Care?
• What information should I have with me when I go?
• Can the doctors there contact you?
12. When one doctor prescribes you medication, especially those which are pain killers, let the other doctor know so it never appears you are hoarding medications.
13. Be a “good patient.”
• There will be times when you must challenge a doctor’s opinion, but if you really like the doctor and wish to keep him or her, reasonably consider the doctor’s requests.
• If you frequently cancel appointments, arrive late, delay getting your lab tests done, etc. the doctor will be much less likely to help you or keep you as a patient.
14. Do your best to write down a list of things you wish to speak to the doctor about in order of priority.
Tell the doctor, “I have 4 questions today, so would it be okay, if I tell you what they are and then if we run out of time, you could call me back on the last one?”
15. Communicate your needs.
For example, if you often bring a caregiver, friend, or spouse with you, is the doctor comfortable with this?
16. Consider if this doctor is best for your needs now.
I have found that I needed a different rheumatologist for my thirties than I did in my twenties, and when I hit my forties it was also time to start looking around.
17. You mentioned prayer. Yes!
Finding, visiting, and keeping a doctor can all be very stressful. Ask friends to pray for you to be led to the right team of medical specialists to meet your needs.
Remember to send a thank you card to your doctors now and then or bring in a goodie unexpectedly. Before your appointment, pray for a sense of calmness, and yet also discernment and wisdom to know when to speak up.
* * * *
I have had a good medical team for some time now, but I’ve also had my share of doctors who have not particularly liked me.
At wound care, I had one doctor who casually said they would “just take a little piece of bone out of my ankle and. . . ”
At this point, I said, “With all due respect, I understand you are doing your job. But with rheumatoid arthritis that could disable my ankle for good. Dr. Y is my rheumatologist, and I won’t be having any procedures done until you run them past her, she approves them, and I have an opportunity to talk with her.”
He was not happy with me and did not like me questioning his authority. He especially didn’t like having to admit to me a few days later that he’d talk to my rhematologist and I would not be having the procedure.
On the flip side, I also left my son’s pediatrician and got a recommendation from a children’s therapist for another pediatrician.
In less than 30 minutes, the new pediatrician had us appointments at Children’s Hospital, a psychiatrist (who was ‘not accepting new patients’), and many more specialists who helped us solve a difficult case involving food therapy. We felt so relieved.
Last year my rheumatologist of 10-plus years was rather rude and I left the office in tears – a rare event.
I have found that many good doctors still have a “season” of being motivated to treat you. For me this seems to be 8 to 10 years. And despite a good relationship, I do expect to be treated with respect.
I found a new rheumatologist and am pleased with what he has been able to do for me, the medications he is willing to try, and his experience in using both Western medicine as well as herbs, etc. when possible.
* Lisa Copen is the founder of Rest Ministries, which serves people who live with chronic illness or pain through daily devotionals, articles, and much more. Lisa lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why at the Rest Ministries shop.
* *This article is reproduced with kind permission of RestMinistries.com, ©Rest Ministries, Inc. 2012. All Rights Reserved.
My ME/CFS specialist Dr Bested just recommended this video from the IACFS/ME Conference in Ottawa, 2011.
Before engaging in any Graded Exercise Therapy (GET) please get your therapist to watch this 20 minute video that explains why working up to walking for a targeted amount of time does not necessarily make you healthier or more functional even if you reach said target, and how this type of therapy can actually undermine your health even though you're walking more than you were before implementing GET.
There is some epidemiological evidence as to GET failing ME/CFS and FM patients, but here is a great physiological explanation to give to your health care team as to why people with ME/CFS/FM need to take great care implementing any new exercise program. It also explains the mechanism behind why you should never be pushed beyond your limit, and often not even to your limit.
Exercise physiologist Staci Stevens explains this phenomenon that ME/CFS and FM patients all face and gives tips on how to effectively manage exercise intolerance.
The tinny sound goes away after a few minutes.