A history of disbelief

Dr. Nigel Speight interviewed by Daniel Moore on Post-Exertional Mayonnaise.

Daniel meets his childhood paediatrician, Dr Nigel Speight again after almost  30 years. They talk about the history of disbelief that comes with an ME diagnosis, his work with families who are accused of Fabricated or Induced Illness (FII) and his hopes and fears for the future.

This interview between Dr. Speight and Daniel Moore covers a lot of information. 

I thank Daniel for letting me share the podcast in more detail than a normal review.  There was so much good information, I ended up covering a lot more of the podcast in this article than I originally intended.  I didn’t cover it all, so I recommend listening to it if you are able.

The following are some of the things discussed that I found especially interesting.

Introduction

Daniel was a preteen patient of Dr. Speight about 30 years ago.  They talk a bit about that connection.  The discussion included Dr. Speight recommending removal of chocolate and cheese from Daniel’s diet to stop migraines.

Dr Speight talks about getting into this field. Meeting his first pediatric case of ME, learning from Betty Dowsett and trying to find other doctors who believed ME is biological.

Note: E.G. (Betty) Dowsett published papers about ME including, Myalgic encephalomyelitis–a persistent enteroviral infection? (1990) which included the statement:

“This illness is distinguished from a variety of other post-viral states by an unique clinical and epidemiological pattern characteristic of enteroviral infection. Prompt recognition and advice to avoid over-exertion is mandatory.”

The history of M.E.

Then Dr. Speight talks about the history of ME, including the outbreak at the Royal Free Hospital.  He brings up an interesting observation that the Royal Free Hospitality had a lot of women on the staff which then led to a majority of those who contracted ME as being women. 

He also explained about how there has been a tug of war between the biological and psychological approach.  He thinks the biological understanding is now winning.

Another point, that I wholeheartedly agree with, is that the “modern” method of doctor education does not include the importance of taking a thorough health history. 

My medical records are riddled with errors which leads to encounters with specialists being problematic (& traumatic).  They only have time to review a bit of the superficial (inaccurate) record and then they make adamant recommendations which are often more harmful than helpful. 

Dr. Speight gives examples of how the stigma of ME has affected the recognition of the disease.

I share Dr. Speight’s concerns about the widening use of fabricated or induced illness and MUS (medically unexplained symptoms).  With most doctors not feeling confident to give a definitive ME (or Long COVID) diagnosis, it leaves the patients vulnerable to these other psychologizing diagnoses. I am glad they discussed the importance of using the term myalgic encephalomyelitis and dropping the chronic fatigue syndrome and how CFS criteria did not equate with ME.  Strong labels can benefit the patient’s experience when interacting with medical settings.

Different terms for the same disease

Daniel and Dr. Speight are both based in the UK.  It can be confusing to understand how these different terms have been used in the UK compared to the US.  The terminologies have some different histories specific to different countries.  I wrote about CFS HERE and ME/CFS HERE.

I don’t fully agree with Dr. Speight that the NICE guidelines are an efficient way to diagnose ME.  I think it is more effective than using Oxford or Fukuda but I think it is still far too broad to be a definitive tool.

I think anyone getting an ME/CFS diagnosis using the NICE or U.S. CDC criteria needs to then get adequate testing done to make sure nothing has been missed.

I have seen too many patients miss out on screening for treatable conditions (or co-conditions) like dysautonomia, Sjogrens, parathyroid, EDS, MCAS, etc because the ME/CFS diagnosis stopped all further investigation. 

IVIG

In regard to treatment, Dr. Speight brought up the value of considering intravenous immunoglobulin (IVIG) but that it is very hard to get it prescribed in the UK (and elsewhere).  He wrote about that HERE.  He also brought up melatonin which is something I have used for many years with good effect.

I truly appreciate that he brought up the danger of imposing strict sleep hygiene.  He talks about the deterioration a patient experienced by being forced awake as well as forced to reduce the number of hours allowed to sleep.  I know the biological need I have for sleep (& rest) and that it is dangerous for me to try to override that with “sleep hygiene”.

One avenue he discussed was how educating post grads would be a useful approach.  It would be beneficial to have an education session devoted to ME with a doctor and patient presenting a case about ME.

Thanks to Daniel

Thank you Daniel for hosting this insightful talk and thank you Dr. Speight for sharing your knowledge and for your many years of kindness and compassion.  Not only have you been instrumental in improving the lives of your patients but also helped all of us who have benefitted from your efforts to educate.  That education includes your participation in creating the International Consensus Criteria (ICC) & International Consensus Primer.

Colleen Steckel

Source: View from the Trenches of Myalgic Encephalomyelitis

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