Saturday, June 1, 2013

Ellen Goudsmit's assessment of the new UK CFS training course for MDs

Although I have been studying ME and CFS since the early 1980s and have a PhD on the subject, I managed to score 0 out of 10 on the new course designed to inform UK GPs about CFS/ME.

The first part of the course explains the symptoms and three patients tell about their tiredness and feeling 'under the weather'. Those who still work are struggling. None appear to have discovered pacing. They sleep during the day and can't sleep during the first part of the night. Prof Wearden explains the fear-avoidance model with the emphasis on deconditioning and its effects (lack of blood flow resulting on the most common symptoms). If lack of activity or faulty beliefs are not to blame, then anxiety and depression might play a role. Familiar problems e.g. dizziness, bladder and visual disturbances etc are glossed over or not mentioned. [NB: One third of ME patients develop balance disorders which can be linked to inner ear pathology.] All GPs are accepting, understanding and very patient.

The impression that I got from the first section is of three overtired individuals who had unfortunately chosen the wrong coping strategies. Two mentioned an infection. One had flu but it's not clear if this was the trigger. The other struck me as a person who might have glandular fever or a recurrence thereof. All needed more rest, not more activity. There was no classic case of ME (perfectly healthy, caught an infection, developed muscle weakness and other symptoms following minimal exertion, sometimes became even more ill in the next few days, learnt to pace but this only reduced relapses, and ofcourse, suddenly discovered that they couldn't drink alcohol or eat their usual diet.) There was almost nothing about the typical fluctuating nature of the illness. I sensed that two were tired-all-the-time, a sign that the person has something other than ME (according to Drs Ramsay and Dowsett.

Section 2 focuses on management. The message is that CBT and GET are safe and effective. APT is not. GPs are seen suggesting to patients that they need to find a baseline when they don't feel worse a few days later and are then instructed to gradually increase their activity levels. There is no acknowledgement of the results from motion-sensing devices that any improvement after CBT or GET can't be attributed to increased activity. To be fair, the GPs stress the importance of avoiding over-exertion, but that is more closely associated with an approach called pacing. GET as devised by White is not symptom-contingent. You follow a schedule and are asked to try and tolerate some discomfort (i.e. that might include cues of over-exertion.) So is this GET or pacing? I wasn't sure.

Not only does the course ignore pacing, it doesn't allude to other alternatives to CBT/GET e.g. the equally effective, less theory-driven programmes such as those devised in the USA and by Ho-Yen in the UK.

A patient tells that gradually increasing activity did not help but the lack of balance means that this is not adequately dealt with. The subtext is that CBT and GET are the most effective treatments around. It would be wonderful if it were true but the objective scientist can not be so confident. We know that over 80% of patients in the PACE trial were still in receipt of benefits at 52 weeks. If CBT and GET are 'effective', why are so many still on benefits rather than working or travelling around the world? [This is my main issue with the fear-avoidance theory and those who promote it. There is this strange tendency to focus on the evidence that supports the theory and a reluctance to amend ideas when the evidence does not. It's inconsistent with the scientific process.]

Prof. Wearden accepts that a few are not helped and the course lit notes that CBT and GET are not curative but a GP informs us that most will do well and a number will recover completely. [According to the research, only about 6% will be so lucky.]

I failed the assessment. There were no questions testing one's knowledge of CFS (or I didn't find them). I can only assume that the grading was based on one's comments at the end of the course. This is where I was asked what I'd learnt and I answered, 'not much'. Elsewhere, I noted the flaws in the theory, alluded to all the research that undermines the approach, and the lack of balance.

I was left with the feeling that the individuals who devised the course did not believe patients with ME, otherwise they might have referred more to exhaustion and acknowledged the consistent reports of adverse effects after GET.

This project was funded by a body that I used to referee for, until I found that there was no quality control and severely flawed studies were getting through. A number of support groups were also involved.

A main cause for the confusion re CFS, ME and ME/CFS in the UK is the assumption, based on an opinion only, that ME is identical to CFS. It crops up at various times during the course. CFS or ME as some call it... Yet there is growing evidence that this is not true. ME occurs in epidemics (CFS is chronic, by definition, so excludes epidemics). Fatigue is not a criteria for the diagnosis of ME (muscle fatiguability after minimal exertion is. The latter can be measured objectively and tests clearly demonstrate the delay in recovery after exertion ends. There is a problem with blood flow to parts of the brain and this is exacerbated after exercise. It's an abnormal finding e.g. on scans). Prof. Jason and his team have begun studying the differences between patients who fulfil the criteria for ME, ME/CFS (Canada) and CFS (CDC). Their results are consistent with my impression and one therefore has to consider that the assumption of equivalence may not be valid.

In my view, this course may misinform many doctors and other health professionals in the UK.

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Ellen M. Goudsmit PhD, C.Psychol. FBPsS

HPC registered practitioner psychologist (PYL15084)
EuroPsy registered psychologist



For information on ME and CFS, see:

http://www.axfordsabode.org.uk/me/me.htm
 

Friday, May 31, 2013

Onward Through the Fog: Patient Survey Results for FDA Drug Development

 
99% of patients are NOT getting better.

New Tools to Hunt New Viruses - NYTimes.com

 
"We've done a great job globally in the last 10 years," said Dr. William B. Karesh, a wildlife veterinarian and chief of health policy for the EcoHealth Alliance, which tracks animal-human outbreaks. "Compared to H5N1 and SARS, we're getting on top of these diseases much, much faster."
 
In her closing remarks on Monday at the annual meeting of the world's health ministers, Dr. Margaret Chan, director-general of the World Health Organization, said the virus was now her "greatest concern."

Until experts figure out where it hides and how it infects humans, "we are empty-handed when it comes to prevention," she said. "These are alarm bells, and we must respond."

* * *

But they STILL haven't gotten on top of the virus that causes CFS, leaving them "empty-handed when it comes to prevent[ing]" yet more people becoming infected with something that already afflicts 17 million people.

17 million.  That's exponentially more people than are affected by the virus that's now WHO's "greatest concern." 

When are they going to be concerned about us?

Thursday, May 30, 2013

Harvey Whittemore Convicted Of Making Illegal Campaign Contributions

 
Unfortunately, the real victims here are the millions of patients who stood to benefit from research performed by the Whittemore-Peterson Institute for Neuroimmune Diseases.
 
Having met most of the family at WPI events, I do have sympathy for what their paterfamilias has put them through.  Let's not forget that they are victims, too.

Sunday, May 26, 2013

Hypoglycemic? Try fructose

 
 
 
meta-analyses found no differences in the effects of fructose, glucose, or other carbohydrates on several parameters on body weight, blood lipids, and blood pressure. In addition, Dr. Sievenpiper's research suggests a marked benefit from fructose for glycemic control when consumed in amounts normally found in fruit.