Monday, 12 October 2009


From Chronic Fatigue to Lyme: Medically Unexplained No More

Labelling sick patients psychiatric is medical abuse.

Over the past year, forces at the highest reaches of medicine have made ever stronger efforts to burden the sick, diseased, and infected with psychiatric labels, consigning them to often mind-numbing psych meds and untreated infection, immune dysfunction, and pain. Some critics see this as psychiatric abuse at the hands of non-psychiatrists --since it is rarely psychiatrists, but rather, those in other specialities who step outside the circle of their training to impose these crude diagnoses on the medically ill.

The above is a quote from Pam Weintraube in Psychology Today

Pam has written some very in depth articles on Lyme Disease, links into some of her articles are on my side bar under Lyme Disease.

I would really like to copy the whole article but hope you will take the time to go to her article through the above link and read it yourselves in full. I expect there will be someone you know who has been labelled with a psychosomatic illness when now there is evidence that it could be a physical illness.

Further quotes from her article.

Other scientists in favor of restrictive treatment for Lyme disease have burdened women in particular with the stigma of psychiatric disease --contending that Chronic Fatigue Syndrome, chronic Lyme disease, and depression may really be one and the same. Gary Wormser and Eugene Shapiro, an infectious diseases doctor and a pediatrician respectively published the proposal in the Journal of Women's Health in 2009, despite lacking psychiatric training themselves.

When it comes to stigmatizing the sick, why let science interfere? Indeed, this past week the American Association for the Advancement of Science reported in its prestigious journal, Science, that 68% of chronic fatigue syndrome patients were infected with a new retrovirus, called xenotropic murine leukemia virus-related virus, or XMRV. (Just 3.7% of healthy people are infected) A follow-up study, also reported in the Science, raised the number of CFS patients infected with the retrovirus to 98%, in all.

Brian Fallon of Columbia University, has this to say about so many diseases presenting in similar ways: "Those who say that the patients with MUS (medically unexplained symptoms) have a purely psychological illness are missing the point about the commonality of these syndromes," he states. "The key element is that these illnesses share symptom profiles because these symptoms represent an abnormally perpetuated physiologic response. For example, it is well known that elevated proinflammatory cytokines produce these symptoms; also well known is the fact that depression can be a by-product of such an elevation because certain cytokines reduce the conversion of tryptophan to serotonin in the body.."

“Despite the effort to keep patients running on empty, science is moving on. “I think this establishes what had always been considered a psychiatric disease as an infectious disease,”Judy Mikovits, the scientist leading the retrovirus work at the Whittemore Peterson Institute in Reno, said this week in the New York Times.

Hillary Johnson, the author of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, has said it best in her blog:"A nova has appeared in the constellation. We knew it would appear some day-but in our lifetimes? Many of us, having given up on recovery, had merely hoped we might live long enough to understand the scientific basis of our suffering. Thousands, perhaps hundreds of thousands, of us didn't make it, or simply gave up. Between the time Dr. Judy Mikovits of the Whittemore Peterson Institute and her collaborators at the National Cancer Institute and the Cleveland Clinic submitted their paper to Science and today, we know at least one woman, the British citizen Pamela Weston, chose assisted suicide rather than go on; in the note she left behind she wrote that she hoped her choice would, in some part, move the UK medical research forward. Might Weston have hung on had she known about XMRV? We grieve for those who couldn't wait, couldn't hang on, and acknowledge their bravery. For the rest of us, this is a day to celebrate"
I urge everyone to read this as well as Johnson's prior post, a copy of a speech she recently gave in London in May 2009.

Pamela Weintraub is a senior editor at Discover Magazine and author of Cure Unknown: Inside the Lyme Epidemic, first place winner of the American Medical Writers Association book award, 2009. A revised, updated PAPERBACK version of Cure Unknown will be published October 13, 2009. The update covers the topic here, and is available on Amazon for a little over $10.
Many thanks Pam for all your efforts in fighting our corner.
I will close with a sunset picture in the hope that not too many suns will set before the medical world starts to listen to what patients are saying.


  1. Thanks for this comprehensive post Jo. I'm going to follow up your link after I've had a little lie down.

    The psychiatric/psychosomatic illness debate is so complex. I think it is also time to destigmatise mental illness. A rheumy once said to me it was 'just' depression. Well, people die of depression and it is also a life limiting illness. I think that some of us want to find a 'medical' reason for our condition, since that would suggest there is a cause and a cure. The reality is much more complicated and uncomfortable than that. Whatever the cause, be it retrovirus, inherited genes, traumatic event or bacterial infection, our whole bodies, minds and body/minds are affected by illness. Every illness has a psychological component.

    I know you'll probably agree with me, just wanted my two pennyworth.

    Have a wonderful day in this lovely Autumn.

  2. Joanne, An excellent read. Thank you. A colleague and I were talking about experiences clients have had with physicians who don't listen or worse, think them hysterical when they speak about knowing their bodies and symptoms. I love the sunset photo. gail

  3. Hi Jo
    Many thanks for your two pennyworth.
    I think the reality will be a cocktail of infections viral and bacterial for lyme and possibly ME/CFS as so many Lyme patients have corresponding symptoms with ME/CFS patients. Also genetic predisposition will no doubt be a part. Have a good rest and look forward to some more photos.

    Gail I am now a firm believer in listening to our own bodies and guideing our doctors after all they only see us for a few minutes at a time and we are forgotten the minute we leave, but we live our symptoms.

    Today I cycled uphill, in 2005 I had difficulty standing or walking across a room. It has been a very long journey of recovery.I was one of the lucky ones.

  4. Happy Thanksgiving!!

    perhaps we should extend the thanks for eart's bountiful harves to include thanks to people like Pam!! ( and yourself for sharing her findings)

    Wish you were here to join us as we have our thanksgiving dinner. If your ears burn is will be because we will be talking about you as we feast our faces!!

    Keep up the good work

  5. Great post Joanne, very eye opening and it makes you wonder just how many people suffer seom such illness without ever realising it or getting any help.

    Doctors can be dodgy, my mum had cellulitis in her legs last year... She went to one doctor for more meds after her prescription had ended and to be signed off again (could barely walk, legs very swollen) and he told her 'ladies of a certain age suffer swollen legs', gave her water tablets and claimed she had severe asthma and couldn't believe she was able to breathe at all.... Um... Right, ok.
    So she had to waste her time going to see another doctor because that one was so useless. Ridiculous.

  6. Alison Happy Thanksgiving to you and your family. I hope the new medication is still helping you.

    Liz I do hope your mother is well now it must be nasty to have an infection like cellulitis I expect she was on antibiotics for it. I have a friend locally whose cellulitis was caused by Lyme Disease but she remembered the tick bite on her hand whilst on a boat trip on the river.It developed into vasculitis and although she soon got onto Doxycyclin she did suffer a few complications with her heart which was eventualy put down to her Lyme Disease. Now on stronger antibiotics she is doing well.

  7. Interesting post from an interesting woman. I am very grateful that the two doctors who saw me through breast cancer, listened to my questions. I remember once, he settled himself in his chair, considered my question, and then, gave me his professional opinion. And it wasn't - you silly woman!

  8. Elephant's eye. You were fortunate to get such a good consultant and I hope you continue with good health.
    I had a lumpectomy of the breast some years ago and was fortunate that it was not found to be cancerous. The treatment I recieved could not have been better. Sdly that is not the experience of many with ME/CFS or Lyme.

  9. This is scary. I'm wonerdering about my fatique....but then again I have to work nights...nothing normal about that.

  10. Patsi I am sure it isn't easy working nights and only natural we all feel fatigue at times that is so diferent than chronic fatigue though.

  11. Isn't it maddening to have to go round and round with doctor's? I dislike when they don't listen... my cardiologist is great but we just found out we can't afford that insurance next year when the rates go up and we have to go with another insurance which only serves a different set of doctors! Nuts! Now I must go round trying to find a new one that has common sense!
    We have several friends who have Lyme Disease, in various stages. Hopefully meds will come round that will ease the pains and one day cure this beast.
    I was told I had Fibromyalgia a few years back after the doctor couldn't come up with any other reason for my ills...a rather flippant diagnosis. Funny how I tend to forget how it feels to have it because it only pops up rarely...but it's been here for three weeks and I remember how it feels now! Each day is a bit of an effort..but it is getting better this week...long live Ibuprofen...and here's to hoping my stomach hangs in there too!!
    I have always wanted to visit England and cottages and gardens and such there, so I enjoy your blog. I, too, can do without modern decor and style, preferring the homey country cottage life...dirt and all!
    Hope that you have a good and energetic week :)

  12. Hi Joanne
    Your post is a good read! ~ I really like Pamela Weintraub. This is a good start for all who suffer with illnesses that have been brushed aside and dismissed in the name of medicine...
    Love the picture, too. Beautiful!

  13. Many thoughts and prayers are beside you on your journey. Happy Thanksgiving.

  14. Thanks so much for such an interesting and informative post. I think doctors are all too quick to diagnose (and make the wrong diagnosis) and here in the States they often will not run tests that may provide answers because the insurance companies won't approve them and pay.

  15. Ellie many thanks for all your comments. In my early stages I was diagnosed with Fibromyalgia. It is a description of symptoms and does not investigate into the cause of those symptoms. Thankfully yours seems to remit quite well so perhaps your immune system sorts out the cause. I am glad you like country cottages because within the next two posts I will be posting some.

    Renee I agree, it is a good start and judgeing by what is buzzing around the internet the patients will drive this forward now as they are in Lyme.(Remembering that many of our LLMD's have personal experience of Lyme)

    Joey Thank you for those kind words.

    Ellie Mae Yes I am sure you are right sadly the tests for Lyme are only 50% reliable so sometimes work against the patient as Doctors are misled into thinking they are accurate.

  16. For some reason Carol is unable to post a comment but she has kindly taken the trouble to e mail me so here is her comment.
    Thanks for visiting. Very good information on Lyme disease. That
    it can be prevented from turning into such a tragic disease just by
    taking antibiotics at the onset is a blessing as long as doctors
    diagnose and administer the meds. I think that's why we worry so much
    about our future medicine/insurance and all the politics that go with
    it if we allow our government to control it.

    I'm able to visit your blog and read your posts...I'm just not able to
    leave a comment.

    Have a good day.....let's see you are about 9 hours behind our time,


    Carol you are quite right that early treatment is so crucial but the other argument is that Chronic Lyme can for many be treated with long term antibiotics and patients can go from bed ridden to returning to work.

  17. counsellingme dot com is Peter Kemp's site in England. ME is the english name for chronic fatigue syndrome. He cultured spirochetes from the blood of at least 10 people with chronic fatigue syndrome. Meaning that they have lyme or related borellia. (I think all 10 tested negative for lyme) But of course you cannot be negative if spirochetes grow from your blood sample.

    1. Hi Brian Thank you. I am aware of Peter Kemp's website and work. He presented this recently at a Parliamentary meeting on Lyme Disease. 19th January 2015.
      I started adding things to this blog about Lyme Disease but as tehre was so much of interest I decided to start another blog just for Lyme Disease - Looking at Lyme Disease link is in my right hand column of this blog. I started it late 2009? and 357,000 page views later it is still going strong and doing the job our Department of Health and media fails to do.