ME/CFS, FIBROMYALGIA,LYME DISEASE, ARTHRITIS

Thursday 4 February 2010

ME/CFS, FIBROMYALGIA,LYME DISEASE, ARTHRITIS

Is medicine honest?
Are Guidelines reliable?
If a doctor says you can't have a pain or symptom because a blood test is negative does that make the pain magically go away?
Are all patients stupid?

These are questions we ponder when we are sick and doctors question our symptoms and illness because they don't understand. All my symptoms Arthritis, muscle weakness, Fibromyalgia, ME/CFS are not uncommon in the population but regularly dismissed by doctors even when we are severely disabled by them, how many could be caused by Lyme Disease like mine?

The guidelines our HPA follow in the UK are based on the IDSA guidelines in America. The controversy over IDSA guidelines grows and grows and just does not seem credible it is so extraordinary, certainly most people will be unaware of what is happening skewing the process that can have such devastating affects on diagnosis and treatment of thousands of people Worldwide.

'CAUGHT! IDSA violates antitrust settlement voting procedures'

Yes this was a heading that caught my attention but the news that followed appalled and frightened me.

Below is an extract from CALDA but take time to visit CALDA and read the full report.
http://www.lymedisease.org/news/lymepolicywonk/336.html

An example of the IDSA manipulation of the voting procedure.
The guidelines mandate that Lyme cannot be diagnosed without a confirming diagnostic test.The tests are known to be insensitive and flawed. Requiring a positive test means that many patients with Lyme disease will fail to be diagnosed. One panel vote described in the AG’s letter was whether this recommendation should be revised. Four of the eight panel members voted for change, without the panel first having voted to determine whether the recommendation was supported by the science. As the AG’s letter points out, this clearly means that had the panel voted in accordance with the Settlement Agreement, this recommendation would have failed as not properly supported by the medical/scientific evidence. Why? A vote to uphold this recommendation would have required 6 votes; however, the 4 votes calling for revision (eventhough predicated on a flawed procedure) plainly indicates insufficient evidence to support the recommendation. Thus, (a) the IDSA failed to vote to determine whether the science supported the recommendation, (b) substituted its own procedure regarding revision (requiring a supermajority vote to revise), and (c) thereby manipulated the voting requirements to achieve a result in its favor.

IDSA dictates the Guideline policy that affects the World our health and welfare and our children's is in their hands!

3 comments:

Alison4 February 2010 at 15:56
Seems to me that arrogance and egos control this group
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Anonymous4 February 2010 at 16:52
The actions of the IDSA beggar belief. Because the Connecticut Attorney General discovered conflicts of interest and other issues with the Lyme Disease guidelines produced by the IDSA, an agreement was reached by which they would be overhauled. This included how the voting should be carried out.

Incredibly an audit by the Attorney General of minutes of their meetings etc has uncovered the fact that they have blatently failed to meet the terms of the agreement.

Does this mean that panel members of the IDSA are above the law?

In the UK the IDSA guidelines are followed by the HPA, so for those ill with Lyme Disease what is happening at the moment is potentially very serious.

Like Joanne I feel overwhelmed by the arrogance of these panel members.

I guess we have to be grateful to the Attorney General for standing up to them
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Anonymous4 February 2010 at 17:28
Joanne

Our minds think alike. Just allowing the IDSA guideline review panel to push past the deadline for a decision stinks to high heaven.

Renee K
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Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.

ME/CFS, Fibromyalgia, Poly Myalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.

UPDATE

UPDATE 10 January 2012