From Our Readers – Comments & Suggestions 04-08-09

Chemical Exposure & ME/CFS

Re: Article, “Is there an association between exposure to chemicals and Chronic Fatigue Syndrome?”

I feel that Dr. Luis Nacul is definitely on to something right. I had accidental CO [Carbon Monoxide] poisoning in October 03. That winter I experienced infections that took a very long time to get over, even with antibiotics. My eyesight worsened dramatically and I slept a lot. I also bought a home that I was remodeling, exposing myself to loads of years of old chemicals and dust/dirt. I worked a day job as an Admin. Asst. and worked insane hours physically on my home every day for weeks. In July that year I developed CFS…. I truly believe a combination of CO poisoning, chemical exposure and over exertion caused my CFS. I can only continue praying for understanding and acknowledgement from Social Security, medical staffing and the public to take this illness very seriously. I am so tired of feeling like I have a nasty case of the flu every day of my life. – BB

There is a minefield of anecdotal evidence supporting a link between ME/CFS and chemical/heavy metal exposure. We just need a team of expert researchers along with their electronic gizmos to put it all together. Our bodies absorb and store heavy metals, household chemicals, insecticides, chemicals used in the production of fabrics – the list goes on. Some of us have super efficient filtration and elimination systems that manage to deal with these pollutants, others for whatever reason are not so fortunate. As we age we tend to become less efficient – also – our world is becoming more and more polluted so more and more of us are falling victim to these horrors… – L


On Having a Judge Decide on a Patient’s Disability – Two Views

Re: Article “Tips for Winning a Fibromyalgia or Chronic Fatigue Syndrome Disability Case…and…What actually happens at a Social Security Disability Hearing?”

“We do not ask the doctor to decide if you are ‘disabled’ – that is a legal decision for the Judge.” For the life of me, I do not understand how a judge can or should be determining if someone is disabled or not! How can it be a legal decision when the courts and judges are not in the business of medicine. Doesn’t it make more sense that a person’s doctor would know and understand if you are unable to work due to a medical condition? This is the most backwards system. It’s asinine! A judge has no business determining if someone is disabled or not; they know no more than the average person about medicine! It should be left up to doctors to determine if someone is “disabled” or unable to work due to a medical condition. – GS

Judges don’t judge on the basis of being experts; they evaluate information presented by you, expert witnesses and your doctor, through medical records, and make a decision about whether you qualify for SS Disability based on what’s presented to them. If you and your doctor have determined that you’re disabled and the expert witnesses (who are usually medical professionals) agree with you and your doctor (also based on the information you’ve provided), the judge will render a verdict about your disability.

Sure, the system is not perfect. Judges are not there to be experts in anything other than evaluating the information presented to them. They aren’t experts in motor vehicle accidents, blood spatters, gun ballistics, temporary insanity, etc., either. But without judges, the system would be swamped with people trying to get a free paycheck for life who are NOT disabled. Someone has to decide in these situations. – CQ


How I Explain ME/CFS to People

…I think it’s important to try to help people understand and educate them to the illness if at all possible. It may help the next person they meet with a concealed illness. We have to speak up when the opportunity arises so that people understand there’s more than one or two of us with “this stuff.”

Sometimes I tell people that, just like everyone has a thumb, most people with CFS share 3 or 4 main symptoms (fatigue, body ache, cognitive disturbances, and usually frequent headaches). Then, just like each of us has a thumbprint that is unique, we each have symptoms that come in unique combinations (chronic sore throats, low-grade fever, gastrointestinal problems, sensitivity to extreme heat or cold, etc.).

The main thing is trying to explain what chronic fatigue FEELS like, and trying to help people understand that they may feel tired, too, but ours is CHRONIC and it affects our lives every day. If people want to understand they will, if they don’t have compassion in their hearts they will simply turn away. The only thing we can do is work together to help people understand this is real. There are hundreds of thousands of us in the world living with this. It’s highly unlikely that we are ALL faking a devastating illness. – K


If You Suffer with Morning Depression

Here are some suggestions.

Put some great photos next to your bed that make you happy or even make you laugh.

Use Scooby Doo pillow cases for you to sleep on, so that when you wake up, you have your chuckle that you’re using them, and it can put a smile on your face.

The night before, set out a super outfit to wear.

Schedule things first thing in the morning so that you have to get up and get going and don’t have that time to stay in bed and be depressed and crying.

Truthfully, I have two cats that wake me up each morning and it is pure gold to be waked up by them.

I also pray with the cats every morning before getting out of the bed and it gets my day going and I express my thankfulness for the many good things that have happened (no dwelling on the bad).

It’s really important that you push yourself somehow. This is the reason why people with pets or kids get up in the morning without much problem, because the pets or kids wake them up, and they get up to take care of the pets. Well, you can start getting going early and sometimes there are groups that meet at McDonalds each morning for coffee and talk; others meet at the Senior Centers for classes (which at our senior center are any age); and we have a heated pool in our city and many go there for early morning swimming. Just don’t give up. – TCD


ME/CFS “Chick Lit” – Really Captures What It’s Like for Young Adults

It’s amazing that this book exists – The State of Me – a 2008 novel about a Scottish college girl in the 80s who gets ME (and it then chronicles her life & struggles/limitations for the next 15 or so years). The author, Nasim Marie Jafry, knows what she’s talking about, as she also contracted ME during college.

She really captures and articulates what it’s like for young adults (especially for those in the 80s) to have this miserable disease. It’s an easy beach/summer read-not sure if it’s been printed in the U.S., but you can get it on Amazon. – O


Advice on Use of the CPAP for Sleep Apnea

Use your machine EVERY TIME you sleep or you will have problems. This is not something you can try and if you don’t like it or it makes you uncomfortable you just stop. Some machines such as mine have a card that records if you are compliant or not, how many hours the machine is in use, etc. Your Dr. will know if you are using it or not. The Dr. can report this… and you will lose your [driver’s] license.

It is very very dangerous to you, loved ones and others if you fall asleep while driving. And to you for your health – heart attack, diabetes, blood pressure, just to mention a few. There are a number of facemasks on the market. Your sleep clinic or supplier will be able to help you make a decision as to what is best, or to try.

This is life altering, and a way of getting healthy sleep. Do not give up on it!


Have You Seen “Missing My Life” You Tube Video?

…It’s actually pretty good & very short – 30 seconds, so maybe more people will watch it ( Of course it doesn’t go into all the symptoms, but it does capture a little of how much CFS sucks (and it gives the bottom line – we lose the ability to have a life when we are sick with this dd). I wish it were on TV rather than You Tube – A


“Green” Raised Flower Bed Idea for Easy Gardening

The best raised flower bed that I have is one we made out of an old 12-foot satellite dish… We flipped it over and filled it with soil and grew veggies in it for 2 years. They need to be recycled and this is a perfect raised bed.


Doctor of Osteopathy (DO) Diagnosed Me

I had no luck getting a diagnosis from my family doctor or a rheumatologist. I found a D.O. (Doctor of Osteopathy) through a now-defunct CFIDS support group and finally got a diagnosis after more than 2 years of ME/CFS, FMS etc. I have been ill since ’99 and have had some remissions in symptoms with the nutritional and other treatments offered by my D.O. – Babe

Note: Doctors of osteopathic medicine (DOs) are physicians licensed to practice medicine, perform surgery, and prescribe medication. They complete medical school the same as “allopathic physicians” (MDs) and often go on to specialize, the difference being that they receive additional training in the body’s musculoskeletal system and are expert in using a hands-on approach to better assess a patient’s physical condition based on motion, structure, texture, etc.


Stimulus Package Includes COBRA Discount

[If you have been laid off and could be on COBRA.] The new stimulus package means that you will only have to pay 35% of your COBRA bill for nine months (after that 100%) – but that is quite a savings. You have 60 days to sign up. – J

Note: For information about the 65% COBRA reduction & eligibility guidelines,
click here.

This information has not been evaluated by the FDA. It is generic and anecdotal, and is not meant to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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