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CDC study finds CFS is physical, not mental

Also the NIH has dropped the FMD component of its clinical study of post-infectious ME/CFS

Despite decades of suggesting otherwise, the CDC has just determined that CFS patients have normal mental health function and severe physical impairments.

The findings coincide with the NIH’s decision to drop a key component of its clinical study of post-infectious ME/CFS, amid patient concerns about serious and potentially crippling methodological problems with the study, highlighted in a review by MEAdvocacy.org.

The CDC Multi-site Clinical Assessment of CFS, which began in 2012, collected data from 450 patients at seven clinical centers in the US.

According to the CDC, the aim of the study was “to characterize patients with CFS or myalgic encephalomyelitis (ME) in clinical practices of clinicians with expertise in CFS/ME.”

Dr Elizabeth Unger, head of the CDC’s Chronic Viral Diseases Branch, announced the early findings of the multi-site study at a CDC Grand Rounds event on ME/CFS in February.

Those preliminary and as yet unpublished findings reveal that functional status in CFS patients is severely impaired, except for mental and emotion function.

The CDC used standardized questionnaires to measure the major domains or characteristics of the illness, including pain, function, fatigue, type and severity of symptoms, and sleep.

Data on medical history, family history, physical examination results, medications and results of laboratory tests was also collected.

One of the tools the CDC used in their assessment was the SF-36 Health survey which defines mental function as psychological distress and psychological wellbeing.

The study showed that mental and emotional function of patients was close to normal, despite the serious nature and often lengthy term of the illness.

The copy of Dr Unger’s slide from the Grand Rounds event shown below has red markers indicating normal values for healthy people and blue boxes representing the range for study participants. The diamonds indicate the study participants’ average score.

Slide at the CDC Grand...

 

FMD control group dropped from new NIH study

Coincidentally, it has been announced that the NIH will drop the controversial functional (psychogenic) movement disorder (FMD) control group from its upcoming clinical study.

The inclusion of the FMD control group and the addition of FMD and behavioral experts to the study ignited patient concerns about whether the study was contrived to validate a psychological basis to the illness.

You can read more about the problems associated with the FMD group here.

UPDATE: Link to NIH study details has been updated – NIH has updated their information [9/3/16]

In the video of the CDC Grand Rounds event shown below, Dr Elizabeth Unger’s presentation begins at the 17:40 mark.

 

 

FEATURE PHOTO: waiting by Michal Ziembicki

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Written by Russell Logan

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Russell Logan worked as a magazine publisher and editor until forced into early retirement through ill health with ME. He has battled with moderate to severe ME for 25 years. He now lives in Noosaville, Australia.

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  1. This is an excerpt of a blog post by Tracey Temple Smith:

    “Is it surprising then that NIH picked Dr. Walitt (see Jeannette Burmeister’s great analysis of Dr. Walitt here) for their intramural study on post infectious CFS? The more you dig into several of the co-investigators, you find similar theories of CFS being a psychosomatic illness.

    This psychosomatization of the disease has caused immeasurable harm to ME patients. It is disappointing that Dr. Unger, who oversees ME/CFS at the CDC, is the cause of much of the misinformation and thereby the cause of medical abuse.”

    • Hi Walter. I agree. However let me throw this out there. Did Dr Unger deliberately give us a glimpse of that slide to stir things up a bit in the NIH and the CDC? It must be difficult in a bureaucracy with hardened views to take a risk like that. Out of all the data that should be available out of that study, she chose that one. And although I didn’t say that slide was responsible for the withdrawal of the FMD group in the article, I am wondering if it played a small role.

  2. The CDC has presented that slide multiple times before so it’s not new. It is frustrating that they haven’t published though.

  3. I’ve been fascinated by the fact that I am not allowed to donate blood for the rest of my life because of a previous diagnosis of CFS and yet, prior to diagnosis they blamed it on depression, being slightly overweight, not exercising enough (I had three small children at the time and was a very busy homemaker), etc. I wasn’t depressed until I couldn’t function physically and even then I wasn’t truly depressed until I couldn’t convince a single doctor of just how horrible I felt.

    • Hi Lori. I thought the same for a number of years myself that it is silly to prevent CFS patients from donating blood, since it reduces the potential donor pool and limits another area we can be helpful to society. I’ve begun to see the other side of it over the years though, which is basically a fear of the unknown. Since we’ve been unable to isolate a physical cause for CFS/ME so far (which only makes it tricky, and possibly something we haven’t seen before, but does not mean there isn’t one), assessing whether its transmissable or not hasn’t been clearly established either way. We do know that in some cases multiple generations within a family can have it, and onset after a flu-like illness is common, but we don’t yet have any biomarker to test for. Also, no comprehensive study of transmission has been done, to the best of my knowledge. There’s also the concern that giving blood could cause or exacerbate a crash cycle, but this is also yet to be evaluated. Basically, we don’t know enough, so we’re being extra cautious for the health of the blood donor and the recipient where CFS is involved.

  4. Then why in gods name ARE THE CDC TRYING TO TAKE PAIN MEDICATIONS AWAY FROM PPL THAT SUFFER LIKE ME especially now when they know its physical and not mental.. I am completely bedridden and I’m getting worse and worse every single day, the pain scale is just insane not to mention the symptoms that are attached to fibromyalgia but let me suffer is their answer, it needs to stop, putting me in a character of CRACKHEADS, METH USERS, HEROINE PUSHING, those addicts will steal and kill for their drugs I JUST WANT TO FEEL SOMEWHAT NORMAL in my life and being bedridden is not living a life… Its watching it pass on by…

    • Pain meds are good for temporarily suppressing symptoms, but do nothing to address the causes of ME/CFS and/or Fibro. Although I doubt that’s why the CDC is against them.

  5. How many people have committed suicide because the CDC has clung for forty years to its mistaken notion that “it’s all in your head”? I wish I had the power to give CFS to every person who has expressed this hateful dismissal of what even cursory, unbiased observation would show to be physical suffering. A mean thought, yes, but I’m tired of taking the higher road, being understanding, waiting patiently, forgiving and hoping, etc., while those who dismissed this disease and refused funding for research have gone on merrily with their lives, making plans, gaining prestige, reaching goals, enjoying the good things the world offers. Why shouldn’t they live my life for a while?

  6. I can remember back as far as the 80s where the CDC used to “steal” money from ME/CFS research and use it elsewhere. I have suffered for years and have been to soooo many doctors, including Mayo with no relief or confirmation that something really is wrong (from their standpoint). After so many antidepressants and other helpful drugs which caused weight gain, which did not help the situation, I am plugging along fighting the good fight every day. I even had one doctor to have her nurse follow me around because they thought I was there to steal prescription pads because I “claimed” I was in pain, but they couldn’t find anything wrong with me. How insulting and depressing.

  7. Russell, the FMD was a dubious prospect from the beginning, as there is no case definition for it anywhere for coding or diagnosis and even in the DSM there is only a passing mention. Which makes it all the more extraordinary that someone actually tried to get it into an NIH study. Wish I had the energy to track down the etiology of this farcical proposition.

    • Hi Deborah. The inclusion of the FMD group, given that it is so poorly defined, provides an insight into the thinking of the NIH more than anything. That they allowed it, shows that the principals are more concerned about fiefdoms than solving ME. It reeks of bureaucratic compromise and bad science and doesn’t auger well for the study outcomes.

  8. Hi – I could easily have been diagnosed with chronic fatigue and fibromyalgia and did have them as a result of Lyme and Coinfections, not really cured by antibiotics and definitely chronic conditions. I strongly suggest that everyone with CFS/ME consider they are probably dealing with chronic multiple infections of a complicated nature which our current medical system is either unable or unwilling to properly diagnose and treat. I consider myself lucky to have found my way through lengthy reading to my own conclusions and to a source of truly useful and in depth information. The tests for these infections are pathetic at best. You are given a test for one strain of a bacteria of which there are multitudes of strains, and then you are told if the test is negative you don’t have it. The CDC itself now admits how unreliable Lyme tests are and to diagnose clinically, but doctors still rely on the tests. A doctor who is truly in the know will tell you the tests are unreliable. The other doctors dont want to admit how much they do not know so they act authoritative and posture. Its the same with the rest of the multitude of coinfections such as Babesia (which causes brain swelling), Bartonella, Ehrlichia/Anaplasma, Mycoplasma, etc.etc.etc . Read Stephen Buhner’s books if you want to get the real picture and get better. And remember if your symptoms are caused by infectious agents you will get worse from the die off as you treat while you are improving. So one must hang in there long term. It took me six plus years before I felt mostly like myself again, and im still fighting. But my immune system now has the upper hand. “When the rate of misdiagnosis in this country has not changed since the thirties” we have a problem. Its called a for profit model of medicine. So educate yourself. Read the studies by microbiologists. And Best Luck to You All.

  9. Carrie, so pleased you’re feeling better. What route was your recovery, was it IV antibiotics, and how did you get diagnosed Lymes in the end? Thanks

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