Exercise and chronic fatigue syndrome: an interview with Professor Trudie Chalder

I have ME/CFS for 8 years. I work full time job and have a demanding little one. I exercise and have been all the way I have been sick, sometimes that means 3 walls push ups, up to walking 3 miles. One day I am all up and running and next day I cannot get out of bed. I am lucky to have a mild version (lost about 50% of my energy) and everyday is a challenge. But no it is not being afraid of exercise. Is the inability to produce energy on demand to do the most basic things: Brush teeth, stand to eat, drink water. Your energy production changes from day to day.

I have low NK cells, Low T cells, Viral reactivation. I got proper treatment: Antivirals to treat infections. Midodrine + Florinef for Orthtostatic intolerance. I am at 7/10 now.

If you have CFS pls be treated appropriately. Check your immune system and you will see the abnormalities: Lymphocite subset test, check reactivations: Viral: hh6v,ebv,parvo, coaxsaxie, CMV....

I do not feel like having the eternal flu anymore. I am glad I didn't let LAZY doctors tell me there is nothing wrong w me. When I saw the right ones: Immunologist, Electrophisiologyst and got the right tests : Check NK, Tcells, B cells, Tilt Table test....

I had 3 remissions, which I crashed on heavy exercise the 3 times (tried to run, too much weights...) So I know you have to keep moving, too much is bad. Listen to your body.

GET for 'true' ME/CFS patients, not those who have been misdiagnosed with the condition but who actually have other undiagnosed diseases, has been, and is currently, being proven  to be one of the very worst things a physician can do to these patients.  The premise being promoted in this article is not only quite dangerous, leaving patients bedridden for weeks, months and even years, but socially irresponsible as it leads to medical abuse of true ME/CFS patients and leads to the old ways or reinforcing public misconception of how truly critical this disease is the most body systems.  

New research is proving the charltans who push this quackery to be truly ignorant of the disease itself. In a year or two people will look back at articles like this and shake their heads in amazement at the arrogance and ignorance of some of these medical doctors.

It is articles like this that belittle this condition. "Fear avoidance"' my ass. I was in nearly complete remission for 3 years. I thought I was safe so I took an extremely hard exercise course and had a relapse so bad I'm still recovering from it years later.

But our fears are "not irrational"; this according to Prof Trudy Chalder herself.

Here's what Chalder said in the BMJ rapid responses section:

"We would like to clarify that we did not say that fear avoidance was the cause of CFS [3,4]. We did not state that the illness was psychological or an exercise phobia. Nor did we say that fear of exercise in CFS was “irrational”. "

http://www.bmj.com/content/350/bmj.h227/rr-24

So, it seems Chalder agrees that our fear is in fact rational and sensible.  And real and rational fear is present in order prevent us doing harm to ourselves.

So what exactly is Ms Chalder saying now?  

I'm a biologist, and I understand that fear is the body's way of preventing us from doing things that cause us harm.  

I totally agree that irrational fears could probably be helped through CBT, but if a fear is in fact totally RATIONAL then trying to persuade a person to ignore that fear is (in my view) a completely  IRRATIONAL position!

Other responses to the original paper can be read in the BMJ rapid responses section here:
www.bmj.com/content/350/bmj.h227/rapid-responses

I feel that the whole article sums up completely what is wrong with the treatment of M.E. / C.F.S. in this country. I have had M.E. for 20 years, in my personal opinion the greatest impediment to the objective identification of the physiological causes of the condition, required for the subsequent postulating and formulating of a remedial solution, is the NHS’s prevalent dependency upon psychological treatments for this condition.

I do not say that GET and CBT do not have a beneficial effect upon sufferers, as clearly it helps to provide the ill with a positive course of action, giving them something to do. However the negatives of assigning a “fear” quotient to the patient, whereby you start with the premise that the illness in their minds and that their journey towards acceptable health is being impeded by their “fear” of activity is simply insulting and unhelpful.

My experience was that I was a county athlete, part-time ski instructor and weekly squash player, I already had an Honours degree in law, master’s degree in business administration and was in the last 6 months of a European master’s degree in international business at Europe’s oldest business school in Paris. I had place to continue post-graduate study at a New York university and was working and sponsored by the UK company pioneering deferrable load management with US power utilities. I would assume that this confirms that I was not workshy and that maybe I had very little to worry about, as my future seemed golden. Following a bout of glandular fever I started to suffer with all the now recognised symptoms of M.E. and though for 5 years I had to listen to medical professionals tell me it was stress, finally I came across a doctor in Oxford who diagnosed me with M.E.; this diagnosis has been confirmed on several occasions by professionals with knowledge of this area.

Despite this diagnosis, for many years I have thought that when (very occasionally now as there is no point) I go to the G.P. surgery I feel there is a large box that flashes up on the doctors screen saying “hypochondriac”. I now know why. Last year I had to have some teeth removed, so I asked my doctor to write a letter to the surgeon outlining my medical history. I opened the letter before giving it to the surgeon and in two pages of explanation she only mentioned M.E. once, on one single line. She did go on ad nauseum about the diagnosis of stress at the outset (which in light of the later diagnosis of M.E. was obviously wrong) and mentioned all the NHS and privately funded CBT and GET courses id been on. If I’d read this letter without knowing the facts Id have thought I was a hypochondriac. I would thought that the M.E. diagnosis by the Head of Psychiatry at a Russell Group university and the same diagnosis by a neurologist at a leading teaching hospital would have put the “stress” label to bed, but clearly not.

Assigning “fear” to the patient is the coward’s way out.  It places the responsibility for the condition and its effects on to the patient, thereby absolving the practitioner of the blame if the patient doesn’t get better. M.E. has repeatedly been recognised as an auto-immune condition and telling the patient to stop being a baby, grow-up and stop being scared is not going to solve that.

Finally, I exercise in the gym every night, I have done so for 10 years. My ability to exercise varies by what appears to be cycles of tolerance to physical activity. 10 years of this and I can only manage 15 minutes at best of low aerobic or light weights activity. I am not scared of the consequence of over doing it, I know what will happen because I experience frequently if I overdo it. It is not a fear of it, it is an acceptance of the consequence, yet trying daily to push myself forward.

The open-minded practitioner would say “ right I can see that when you started you looked great and perfectly normal, but ten minutes of yoga has left you shaky, unstable and clearly there is something physical going on here, let’s see what’s changes in your body to cause this”, not “you look a bit stressed to me  I think you might need a phycologist”.

But our fears are "not irrational"; this according to Prof Trudy Chalder herself.

Here's what Chalder said in the BMJ rapid responses section:

"We would like to clarify that we did not say that fear avoidance was the cause of CFS [3,4]. We did not state that the illness was psychological or an exercise phobia. Nor did we say that fear of exercise in CFS was “irrational”. "

http: //www .bmj.com/content/350/bmj.h227/rr-24

So, it seems Chalder agrees that our fear is in fact rational and sensible.

So what exactly is Ms Chalder saying now?

I'm a biologist, and I understand that fear is the body's way of preventing us from doing things that cause us harm.

I totally agree that irrational fears could probably be helped through CBT, but if a fear is in fact totally RATIONAL then trying to persuade a person to ignore that fear is (in my view) a completely IRRATIONAL position!

Other responses to the original paper can be read in the BMJ rapid responses section here:
http:// www .bmj.com/content/350/bmj.h227/rapid-responses

Sad to see that Professor Trudie Chalder continues to do what she does best, telling nonsense about a debilitating neuro immune disease in your article called: "Exercise and chronic fatigue syndrome: an interview with Professor Trudie Chalder"

She "forgot" to tell you that they used the Oxford criteria in the PACEtrial which we're designed so that they can select patients who do NOT have the disease.

Or as the American p2p recently stated about these criteria:
"The Oxford criteria (published in the Journal of the Royal Society of Medicine in February 1991) are flawed and include people with other conditions, confounding the ability to interpret the science.”

Its like doing research on patients with Cancer but then selecting patients who are depressed etc so that you can proclaim that exercise and behavioral therapy are effective. Which is just total nonsense.

The CFSAC (a federal advisory committee chartered by the US Dep't of Health & Human Services) has now (January 2015) called for studies using the Oxford criteria NOT to be used anymore. Which means that the PACEtrial and its flawed conclusions should be binned.

On the 14th of january 2015 the PACE trial authors published their secondary mediation article in the lancet psychiatry and their conclusion was:
"Our main finding was that fear avoidance beliefs were the strongest mediator for both CBT and GET. Changes in both beliefs and behaviour mediated the effects of both CBT and GET, but more so for GET. The results support a treatment model in which both beliefs and behaviour play a part in perpetuating fatigue and disability in chronic fatigue syndrome."
image.thelancet.com/.../abstract

On the 29th of january the PACE trial authors responded to the following article in the BMJ ("Tackling fears about exercise is important for ME treatment, analysis indicatesBMJ 2015; 350 doi: http://dx.doi.org/10.1136/bmj.h227

(Published 14 January 2015)") stating in their rapid response:
"Nor did we say that fear of exercise in CFS was “irrational”." and:
"in an illness where exercise increases symptoms".
http://www.bmj.com/content/350/bmj.h227/rr-24

So hardly 2 weeks later they did some serious back peddling in the bmj. Making it very clear that when they published their article in the lancet they already knew that fear avoidance was just a load of nonsense and also that exercise therapy actually makes things worse !!

So for the first time ever they have acknowledged that exercise therapy is harmful in ME/CFS. And as you know harmful therapy should not be used and contravenes the do NO harm principle of the GMC.

Sadly she forgets all this when talking to you. But that is what these psychiatrists have been doing for decades, everything which shows that their believes, for which they do not have any evidence; why because it doesn't exist, is totally ignored.

I think it's very sad that she "forgot" to mention her own rapid response in the BMJ when talking to you, it also shows that these psychiatrists want to make sure at every cost that no one realises that ME is a debilitating physical disease.

She also ignores their own research that shows that exercise causes immunological damage / abnormalities in ME.
niceguidelines.blogspot.com/.../...e-exercise.html

Furthermore exercise physiologist professor VanNess and others have clearly shown that two day exercise testing clearly shows there are underlying physical abnormalities.
Exercise physiologist Prof VanNess responds to the preposterous idea that ME patients remain severely, physically debilitated due to an irrational 'fear of exercise'
niceguidelines.blogspot.com/.../...of-vanness.html

Exercise physiologist Professor Keller has now issued her response as well:
"Given what we have learned in the past eight years about this illness, it is intellectually embarrassing to suggest that ME is a psychological illness".
niceguidelines.blogspot.com/.../...ellerit-is.html

And that you cannot exercise your way out of this disease. And when you can you either do not have the disease or the disease has gone into remission which only happens in about 5% of patients.

And as you know exercise physiologists use exercise testing to measure things in patients, psychiatrist don't. And all the objective tests as mentioned in the PACEtrial protocol, like the 6 minute walking test,   wearing an actometer for a week etc were all ignored by the final article as the results were so bad. As someone noted on facebook, if this had been done in the world of sport, this would have been called game fixing.

If you read the recent IOM report (February 2015), it clearly states that "there is no effective treatment" and "being subjected to treatment strategies that exacerbate their symptoms." and also that ME "is a medical—not a psychiatric or psychological—illness."
http://www.ncbi.nlm.nih.gov/pubmed/25695122

If the psychiatrists had done their job as a doctor we would have had proper treatment 10 - 15 years ago and I would have long been back to work; as it is patients who are severely ill are left to rot by psychiatrists. Disgraceful doctoring.

You probably know that the Norwegian study by oncologist professor Mella etc with the cancer drug Rituximab suggests that ME is an autoimmune disease. That and thousands of other research articles that show that ME is a physical disease are ignored by these psychiatrists and as you know doctors should not ignore evidence.

So no wonder these psychiatrists are called Pinocchio Psychiatrists on the Internet.

So please rectify your article and pray that you do not get this very debilitating disease yourself because if you do just like me you're then in for a big shock because the actual disease has no relevance to what these psychiatrist have been saying about it for decades.

Sincerely,

Dr Speedy, a doctor who has been bedridden with severe ME, thanks to a major relapse caused by very harmful graded exercise therapy which breaches the do NO harm principle of the GMC. Doctors who continue to use these harmful therapies should fail their revalidation and more ...

PS: the same day that this article was published, an article was published in naked science with the title is ME an autoimmune disease ?

We all know that exercise and psycho blah blah are not effective treatments for autoimmune diseases just like they are not effective treatments for cancer, heart disease etc. They are just ways to blame the patients and fob them off.

Professor Chalder is simply speaking nonsense, dispiriting that she refuses to catch up with the science.