+100%-

Can we please stop pretending that it is?

Note: In the following text I refer to “ME” to mean “ME not caused by Covid”. This is not technically correct, but done for simplicity.

Prior to covid, there was little hope for people with ME. Less than 5% recover & it is the most underfunded disease relative to illness burden [link]. Research into ME has proceeded at paces that can only be described as glacial. ME patients are routinely gaslighted – many still assume ME is psychological, thus further impeding any meaningful progress. Doctors who treat people with ME & its comorbidities are few and far between. In short, people with ME are often stuck with a debilitating illness, with little support, and slim chances of recovery. I am one such person with ME. 

Early on in the pandemic, there was speculation as to if Covid would be another ME causing virus. This has since proved true. Estimates vary, but a large portion of Long Covid is ME and, in the US, Covid has likely resulted in roughly 4-7 million Long Covid ME sufferers joining 2-3 million existing non Covid ME sufferers.

Many folks with ME, myself included, thought that this influx of cases might end up helping those of us with ME who had been here all along.  After all, a substantial portion of Long Covid *is* ME.

Several years in though, this hope that Long Covid will help people with ME has turned into a baseless assumption. As things stand, there is substantial evidence that Long Covid is *not* helping people with ME in any systemic, meaningful way. By this I mean, I have yet to see any area where Long Covid is having a demonstrable net positive impact for people with ME. There are single studies, people, and organizations that are benefitting people with ME as a result of Long Covid, but all of these have the problem that, for any single instance of Long Covid benefitting people with ME, there may be another instance where ME is being harmed as a result of Long Covid. 

As an example of this, consider that, for every study on ME that happened as a result of Long Covid, there may be one or more studies on ME that didn’t happen, also as a result of Long Covid. This could be due to researchers moving on from ME to Long Covid & then either repeating existing ME studies on Long Covid, for example. I challenge readers to come up with evidence of a single such area where Long Covid is currently having a systemic net benefit for people with ME. 

Possible unproven future benefits don’t count. Many people with ME are hanging on by a thread and don’t have time to wait. Personally, I expect my long time partner will leave me soon if my health does not improve in the very near future. I do not have a plan for when that happens. I do not think I am currently capable of living alone and without income. Many other people with ME are in similar or worse boats. 

Below, I will present evidence that Long Covid is having either a neutral or negative impact on people with ME in the following areas: Awareness, funding, access to medical resources, and quantity of research.

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I don’t say all of this to be depressing. This article is not meant to bring down those who have hope of a better future for people with ME. To the contrary, my goal is to move the community toward that goal of a better future for people with ME, and for that, I think we currently have a situation that warrants acknowledgment and action.

This can end up benefiting both people with Long Covid and people with ME, but only if we first recognize that Long Covid is not currently having any systemic benefits for people with ME & in fact is actively harming people with ME in several ways. Then, we can better fight for the inclusion of ME with Long Covid – in terms of research, funding, awareness, etc. The status quo of complacency is not getting us anywhere. Ultimately, this should benefit people with Long Covid as well as people with ME.

Why this matters: 

ME & a large portion of Long Covid are one and the same. Still, assuming Long Covid research will trickle down to help people with ME is aggressively optimistic. If the treatment for Long Covid ends up being a Covid-specific antiviral (not unlikely based on evidence of viral persistence) or is otherwise Covid-specific, then this treatment is unlikely to work on ME triggered by other causes. 

One might claim that finding a treatment for Long Covid would still represent a large step forward for people with ME, even if this treatment does not work on ME not caused by Covid, after all, now, we “just” need to find the specific antiviral for every other cause of ME.

Unfortunately, a) Not every case of ME is caused by a virus, and b) I would argue though that, at this point, it could still take 10+ years to get to the point of having treatments for other people with ME.

Many of us do not have this kind of time left. It is also a best case scenario. It is likely that being sick longer will create more treatment challenges. Treatments that would have worked on someone who has been sick for one year may not work, or may only partially work, on someone who has been sick for 10 years. These challenges will not be addressed by Long Covid research that focuses solely on those who have been sick for < 3 years.

If there is something that would help people with ME but not people with Long Covid, it will likely never be tested in people with ME. It will be tested in Long Covid, concluded it does not work and abandoned. (This is similar to the situation in drug research, where most initial research is conducted on male rats. As a result, women may have more or unexpected side effects, and lower efficacy, & if a drug would have worked for women but not men, it will never make it out of animal trials –  link).

Additionally, including people with ME in Long Covid research would have benefits for Long Covid patients too. No Long Covid patient has been sick for more than 3 years. ME patients have. By including ME patients in Long Covid research, we can better understand the long-term disease course and predict how Long Covid might behave after patients have been sick for longer. We can then anticipate these changes and possibly prevent them. If, for example, there are certain complications or comorbidities associated w/ Long Covid whose prevalence increases w/ time, we can study these in people with ME now & better anticipate their appearance in people with Long Covid. A better understanding of the disease course over time & the different ways ME can be triggered could also help shed light on disease mechanisms. 

Current Effects of Long Covid on People with ME

The current assumption going around is that Long Covid is benefitting people with ME. Below, I present evidence that this is a baseless assumption & that Long Covid is either having neutral or negative effects on ME in several areas. 

Awareness

By “awareness” I mean public knowledge of the details, scope and severity of a condition. Having more awareness can lead to more funding & research as well as less gaslighting of those afflicted.

So, is Long Covid increasing awareness of ME?

Google search trends

If it were, we might expect that the number of google searches for ME would have some correlation with the number of google searches for Long Covid.

That is not the case. During the pandemic, search interest for Chronic Fatigue Syndrome (CFS) stays stubbornly flat. Surges in search interest for Long Covid show no perceptible impact on CFS search interest. (Note that, I use CFS here instead of ME since CFS is much more common as a search term.)

https://trends.google.com/trends/explore?date=today%205-y&geo=US&q=%2Fg%2F11qm6vy88k,%2Fm%2F0dctd

Google Search ME/CFS long COVID

(There is a tiny bump in search interest for ME that occurs around the beginning of 2022, but this bump occurs immediately after a note about “an improvement to our data collection was applied”, so it is likely an artifact of this rather than actual increased search interest.)

NYTimes Coverage – How often is ME mentioned in Long Covid articles?

Ok, so no more search interest in ME, but maybe more people have heard of it at least? Maybe through reading articles on LC?

To address this, we focus on NYTimes coverage of LC.

To date, the NYTimes has published 362 articles mentioning Long Covid.

Of these articles, 24 (6.5%) also mention CFS, and 14 (3.9%) also mention ME. 

Most of these mentions are only in passing, so one could forgive a reader for missing them.

It is perfectly conceivable that a person may read several articles on Long Covid, and not become any more aware of ME.

NYTimes Coverage – Is standalone coverage of ME decreasing as a result of Long Covid?

Additionally, it seems that Long Covid news coverage could actually be *decreasing* ME news coverage. Again, let’s look at the New York Times. from 1980 to the end of 2019, the NYTimes has published 349 articles mentioning CFS, this works out to about 8.7 articles/year, on average. So far, during 2022, there have been 16 articles mentioning CFS, but 14 of these are actually about Long Covid, mostly only mentioning ME/CFS in passing. Thus, the only two articles in NYTimes in 2022 which mentions CFS but not Long Covid are this one and this one

The first one is about a man with a mysterious illness that involved “strange episodes of utter exhaustion”. ME/CFS was briefly proposed as a possible diagnosis but ultimately was dismissed. The second one is about the challenges of dating for people with chronic illnesses. One of the (many) in the article has CFS, mentioned in passing. (There are also 10 articles from 2022 mentioning ME, all of which are about Long Covid.)

One could imagine that it would feel redundant for the newspaper to cover ME having already covered Long Covid. Hence, the decrease in ME coverage makes sense from that angle. That said, assuming Long Covid is increasing awareness of ME due to mentions of ME in Long Covid articles doesn’t take into account a) the fact that these brief occasional mentions are unlikely to actually increase awareness to any reasonable degree & b) the fact that, for every Long Covid article that mentions ME, there may have been another ME article that was not written as a result.

Silencing of ME in The Atlantic

News coverage of LC is not currently helping to raise awareness of ME. In some cases, it even seems to be making an extremely deliberate effort to avoid mentioning ME.

Take this article from The Atlantic. It attempts to position Long Covid among other, previously known post viral illnesses arguing that “we should try to understand and study [Long Covid] in the context of other long illnesses, not as something that emerged out of nowhere with no comparison or antecedents.” At first glance this seems great – finally, an article that acknowledges other post-viral illnesses!  Reading the full article, however, there is a bizarre and glaring omission – neither ME nor CFS are ever mentioned! Instead, the author goes out of their way to avoid mentioning these terms altogether – instead using invented terms like “Long Mono”.  “Long Mono” is ME. I have never seen it referred to as “Long Mono” previously.

It is unclear what the goal was here, but it could be a deliberate attempt to silence people with ME – people with ME have been gaslighted & considered fakers or hypochondriacs for so long that, many seem to think the only way for Long Covid to get taken seriously is to separate it from ME. Such a separation is likely to harm both people with ME & people with Long Covid. ME obviously due to the lack of inclusion & continued gaslighting, Long Covid because of the knowledge that will be lost by attempting to define Long Covid ME as an entirely new condition.

Awareness of ME Among People with Long Covid

One might think that the influx of people with Long Covid would increase awareness of ME at least among those with Long Covid, but, alas, this too seems to be a mixed bag.

Although some people with Long Covid are good allies to people with ME, others actively work to distance themselves from people with ME in an effort to position Long Covid as more legitimate and more deserving of research and treatments. Such positions serve to actively decrease awareness as they spread misinformation. I routinely see people with Long Covid dismissing ME as “just fatigue” and dismissing the fact that people with ME have all of the same problems and comorbidities as the ME subset of Long Covid. Similarly, they frequently dismiss the fact that a subset of Long Covid *is* ME, claiming that “more research is needed”, or that Long Covid is somehow worse. None of these things are true. ME can have many causes. Covid is one of them. A subset of Long Covid is ME.  

It is unclear to me if the positive allyship is outweighing the negative voices or vice versa.

Conclusion

In conclusion, evidence points to Long Covid having a neutral or negative effect on ME awareness, rather than the positive effect that is commonly assumed.

Medical Resources

ME specialists have always been few and far between. [link, link]

ME & the ME subset of Long Covid are the same & even if they weren’t, they have all the same comorbidities (POTS, ME, MCAS, etc), and therefore largely rely on the same networks of doctors and specialists.

With a large influx of Long Covid patients into this network, ME patients are having to wait longer for appointments or are less able to get appointments vs pre-pandemic. This makes sense, as Long Covid patients need these resources as well, but it represents a net loss of resources for people with ME.

Let’s look at what effects long Covid is having on a few of the big-name ME treatment centers in the US:

Stanford CFS Clinic, Palo Alto, Ca

Stanford ME/CFS ClinicThis is a ME/CFS specialty clinic, around since pre-pandemic times. Since Long Covid became a thing though, they have also been accepting Long Covid patients. On their website, they list their appointment wait time as 4-6 months. In the past year, however, patients on Facebook, often describe the wait as much longer – often 10 months or more. One person reports a wait of 1.5 years.

This wait time seems to be growing – As of March 2021, the wait time was reportedly 7 months.
As of August 2021, it was 10 months, or longer if you want to see an MD.  (Numbers from Facebook and/or Reddit.)

Stanford has also started a separate PACS clinic [link] that treats Long Covid. Long Covid patients can be treated at the CFS clinic, but CFS patients cannot be treated at the Long Covid clinic.

It does not appear that the CFS clinic has expanded to accommodate the additional demand from Long Covid patients. In fact, the only MD at the CFS clinic, Dr. Hector Bonilla, is listed as a co-director of the PACS clinic. It is unclear if he has reduced his availability at the CFS clinic as a result. 

Center For Complex Diseases, Mtn View, Ca 

This center has 3 physicians. Their website describes them as “Specializing in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Dysautonomia, Long Covid, Mast Cell Activation, Autoimmune Diseases, Chronic Infections​”.

The current status of the three physicians who work here, all of which have been with the practice since pre-pandemic days:

    • Dr. David Kaufman – Reportedly discharged many of his more stable ME patients to make room for Long Covid patients [link]
    • Dr. Bela Chheda – Practice full, waitlist full as well.
    • Dr. Jennifer Curtin – Rumored to be quitting soon, to transfer to working full time at her Long Covid startup. In April, 22, she posted to Twitter that, in “Jan 2023 we will start accepting #pwME, #POTS, and #MCAS that were not originally triggered by Covid19 or Covid 19 vaccination”.
      By August 8, 2022, however, the stance had changed. RTHM posted to Twitter that they are “currently focusing on #LongCovid care, we plan to expand our care offerings to additional patient groups […] in the future, but we do not have a timeline for when.” The current status of RTHM only accepting Long Covid patients means that Dr. Curtin leaving her current practice will result in a net loss of care for people with ME.

It is unclear what fraction of patients from the Center for Complex Diseases clinic overall are Long Covid patients. Pre-pandemic, patients on Facebook and Reddit reported wait times for new patient appointments at the clinic as a few months. During 2021, they were reported at ~ 1 year.  Now, they are simply not taking new patients and existing patients are losing access to care as a result of Long Covid.

Bateman Horne Center, Salt Lake City, Utah

Bateman Horne CenterThe Bateman Horne Center is a ME Treatment Center in Utah. As of 8/20/22, their website states that they are prioritizing patients who have been sick for less than four years. The website goes on to say that they may not consider any new applications until 2023, due to a backlog, so this “prioritization” of patients who have been sick for < 4 years is likely better described as an exclusion of all patients who have been sick for more than 4 years. Essentially, this ME treatment center is currently only accepting Long Covid patients, no ME patients. 

A subset of Long Covid is ME. Long Covid & ME are currently sharing the same extremely limited network of doctors. Many doctors who previously specialized in ME & related comorbidities are now focusing partly or exclusively on Long Covid. People with Long Covid need care as well, but, other than Ed Young’s recent article in The Atlantic, I have not seen anyone discuss, or even mention, how, much of the care people with Long Covid are getting, is coming directly at the expense of people with ME. This represents a shift of resources away from people with ME. I have not seen any evidence that doctors and clinics moving on from ME to Long Covid are being replaced. 

There is no cure for ME or Long Covid, but treatment can help manage symptoms. This treatment often takes the form of a “guess and check” approach, requiring multiple doctor visits to explore different treatment options as well as to manage new or worsening symptoms. Losing access to treatment can mean a worsening course of illness. For some, this worsening can be permanent.

This is resulting in people with ME being less able to access care than they were pre-pandemic. Evidence also suggests that there are substantial resources available to people with Long Covid that are not available to people with ME, but the reverse is not true. Typically any specialist who will see a person with ME will also see a person with Long Covid, but a specialist who will see a person with Long Covid will not necessarily see a person with ME.

Additionally, many people with ME are reporting a worsening of symptoms following Covid infections. Based on wording from RTHM, Bateman Horne Center, and Stanford PACS clinic websites, however, these people would not qualify to receive treatment, because symptoms started before their Covid infections. Thus, these people are forced to wait in line behind all of the other people with Long Covid because they dared to also have ME. 

Research 

Has the quantity of research on ME/CFS increased as a result of Long Covid?

ME/CFS Paper Counts & Funding

First, we consider the number of PubMed papers that reference ME/CFS in the title.

The count of such papers is not increasing as a result of Long Covid, rather, they are closely correlated with NIH funding of ME/CFS research, which, in recent years, has not even kept up with inflation.

In 2021 there was a slight increase in the number of papers over the baseline trend, but this is likely because fewer papers were published in 2020 as a result of Covid.

Count of ME/CFS papers

NIH Funding of ME/CFS:

NIH Funding chronic fatigue syndrome

The Gist

  • There is an assumption going around that Long Covid is having all kinds of benefits for people with ME. Unfortunately, these benefits are not supported by evidence.
  • Assuming Long Covid research will trickle down to people with ME is aggressively optimistic. Even if ME & a subset of Long Covid are the same illness, a cure for Long Covid could still be covid specific and not apply to people with ME. After such a cure is found, a cure for other forms of ME could still take 10+ years, assuming it gets funded.
  •  No Long Covid patient has been sick for more than 3 years. ME patients have. By including ME patients in Long Covid research, we can better understand the long term disease course and predict how Long Covid might behave after patients have been sick for longer. We can then anticipate these changes and possibly prevent them.
  • The quantity ME specific research hasn’t increased as a result of Long Covid. It correlates strongly with funding for ME research, which hasn’t increased as a result of Long Covid.
  • Awareness of ME has not increased as a result of Long Covid. There is no increase in Google searches for ME, and news outlets may actually be replacing coverage of ME with coverage of Long Covid, or otherwise intentionally avoiding discussion of ME in Long Covid articles.
  • ME & Long Covid have the same comorbidities and therefore share the same extremely limited network of medical providers. Many providers who previously served the ME community are now focusing partially or exclusively on Long Covid patients. Thus, much of the care people with Long Covid are getting is coming directly at the expense of people with ME.
  • We need to acknowledge the current negative impacts Long Covid is having on people with ME & fight to improve the situation. People with ME need to fight for inclusion with Long Covid – in clinics, articles, awareness, research, etc. This is the only way we are going to get the benefits from Long Covid that many assume are already here.

Applicability of Long Covid Research to ME/CFS

So there isn’t any more ME/CFS research as a result of Long Covid, but since a subset of Long Covid & ME are the same thing, Long Covid research should at least lead to benefits for people with ME?

Maybe eventually. Not soon.

To date, I don’t see any significant improvements that have come to people with ME as a result of Long Covid research. 

There also seems to be a pattern of researchers who previously studied ME moving on to study Long Covid, thus, this loss needs to be taken into account when considering any potential benefit coming to people with ME as a result of Long Covid research. A study on Long Covid doesn’t represent a benefit to people with ME if that study came at the expense of another study on people with ME.

Additionally, as was mentioned earlier, it is entirely possible that Long Covid research will discover a Covid-specific treatment for Long Covid that is not applicable to people with ME. In this case, Covid research may offer a jumping-off point for ME research, but that ME research may take an additional 10+ years to find treatments for the most common ME causes, and that’s assuming it gets funded. 

Most of us don’t have this kind of time to wait. 

Additionally, as mentioned earlier, being sick longer is likely to cause additional treatment challenges that will not be addressed by current Long Covid research. 

By relying on Long Covid to screen potential treatments for ME, we also may end up missing things that wouldn’t have worked for Long Covid but would work for ME. We will test them on Long Covid, conclude they don’t work, and then move on.

We can’t count on Long Covid research trickling down to benefit people with ME. 

We need ME research to be drastically accelerated NOW. People with ME need to fight for this, hard. If we sit back waiting for Long Covid research to benefit people with ME, we will likely be waiting a very long time.

Additionally, we need to acknowledge the current negative impacts Long Covid is having on people with ME & fight to improve the situation. People with ME need to fight for inclusion with Long Covid – in clinics, articles, awareness, research, etc. This is the only way we are going to get the benefits from Long Covid that many assume are already here.

Email: alicekennedy330@gmail.com

Twitter: alice_mecfs

    • Coming up – A Response to Alice’s blog

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