Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

There is only one well-known anecdotal report of a person being rediagnosed with MS and responding to Copaxone as per social media reports. The OMF is latching onto every anecdote as usual. I understand the desperation (aren't we all desperate?). Having a sick son does not give you the right to spread dangerous misinformation/nonsense.

Post-exertional malaise is not a recognised medical symptom outside of the context of ME/CFS so of course it's not going to be listed as a symptom of MS or any other disease. However, fatigue is a recognised symptom of MS. ME/CFS is considered a diagnosis of exclusion so if your "fatigue" is explained by MS, then you have MS.

 

Exactly. We'd be dropping like flies and we'd have MRI evidence of disease. No one would be questioning our disability. We wouldn't even be on this forum.

 

Post-exertional malaise is recognised as a symptom in some patients with Long Covid (PASC).

If the September 2023 ICD-10-CM proposals currently under consideration by NCHS/CDC and supported by Patient-Led Research Collaborative and a number of US ME/CFS organisations is approved, patients coded with:

U09.9 COVID-19 condition, unspecified
> Post-acute sequela of COVID-19

who are identified as having symptoms consistent with PEM will be able to be assigned the proposed new Symptoms chapter code: R68.85 Post-exertional malaise as long as they do not also meet criteria for a diagnosis of G93.32 ME/CFS.

In accordance with ICD conventions, patients diagnosed with G93.32 ME/CFS would not be assigned the proposed new code: R68.85 Post-exertional malaise because PEM is a hallmark symptom of ME/CFS and is implicit within the G93.32 diagnosis code.


Once the R68.85 Post-exertional malaise code is approved, there is the potential for other diseases and conditions beyond Long Covid to also attract the PEM code (as long as the patients do not meet criteria for a dx of ME/CFS).


Edited to add: September 2023 proposals for adding a Symptoms chapter code for Post-exertional malaise to the US's ICD-10-CM.

 

That looks fine as long as the definition is tight enough that everyone is describing the same set of phenomena.

If they're not, it's potentially very unhelpful. We need to know whether PEM (as defined in ME) occurs elsewhere, but a slack definition will result in confusion and lost opportunities.

 

The women (n=1) who RD is referring to in his video is Rachel Riggs. She was all over social media years ago sharing her story about being 'misdiagosed' as having MS. She also has EDS, MCAS ME/CFS et She took Copaxone. She was also on PR for a bit sharing her experience.

https://www.healthrising.org/forums...ltiple-sclerosis-drug-what-does-it-mean.4028/

She has a website about 'clean eating'.

https://www.sandiegouniontribune.co...p-sustain-a-life-and-renew-a-passion-for-food

She also started a fund raiser for her cookbook with 100% royalties donated to the OMF.

https://www.gofundme.com/f/gnf57-cookbook-photography

 

But as far as a I understand PEM is not a recognised symptom of MS, so if you have MS and PEM, another explanation is needed.

I know one person in the UK who is diagnosed with ME and MS. I also heard (from one of the consultants) about someone who was an inpatient at the ME/CFS service in Essex who was re-diagnosed with MS following a brain MRI scan, having been wrongly diagnosed with ME.

 

When I was diagnosed by an M.E specialist with over 20+ yrs experience, who co-authored the draft and original version of the ME/CFS consensus document, he wanted to r/o MS first before diagnosing me with atypical M.E. I saw a neurologist who ordered all sorts of blood work and tests at the hospital. MS was r/o.

Ron Davis is not a clinician and doesn't see patients. He meets them and reads into their experiences, he then makes connections that are just down right spreading misinformation IMO.

 

From Rachel Riggs on PR (non-private thread):

“My response to Copaxone is one of the reasons I knew I DIDN'T have MS.
Copaxone does not improve MS symptoms - its aim is to slow progression and number of new lesions.
I always had a weak diagnosis, I had a couple lesions which disappeared over time. That can happen in people who have migraines.”

This sounds about right. MS patients don’t usually have dramatic responses to Copaxone.

 

Long Covid is probably the same thing as ME/CFS.

 

You're right. This goes to the heart of the problem. He speaks like somebody who doesn't have any contact with clinical reality. And because he has no clinical experience, he has no idea how incorrect the things that he says sound.

 

One of the reasons we **don't know** that 'Long Covid is the probably the same as ME/CFS' is that people who have had ME for more than 5 or so years are being excluded from combined LC and ME research. So reducing the chances of knowledge about developments in ME sufferers over years/decades.

 

The study found that later-presenting patients often had five to 10 years of prodromal symptoms like fatigue and generalized weakness before getting a diagnosis of MS.

“They had been going to doctors for years, but the diagnoses were continually missed,” Zachariah says. “While their MS may not be as aggressive as early presenting patients, and they may not need the same types of medical treatment, we have got to figure out a better way to get answers for these patients who have these nonspecific symptoms.”

It is much easier to get a dx of M.E first if one fits the criteria after six months of PVFS.