I’m concerned about the growing tendency in some circles to equate #LongCovid with #MEcfs. I think this is bad for both #Longhaulers and ppl living with ME/CFS. A thread.

2. Before I start, let me be clear this is not a swipe at the #MEcfs community which has been hugely supportive of #Longhaulers, sharing tips & resources & lots of moral support. I am very grateful for that support.

3. Nor is this to deny the reality that some #Longhaulers have developed or are on track to develop #MEcfs. We know from the first SARS that this could end up being a significant number of #COVID patients.

4. But if #LongCovid and #MEcfs were in a Venn diagram, they would be overlapping circles, not a single circle. That’s important for a few reasons, but first let’s look at the evidence to support different circles.

5. First of all, #LongCovid is quite heterogenous. We still don’t know if there is one explanation or if includes a number of different conditions. The symptoms are incredibly diverse, including every part of the body.

6. #LongCovid seems to encompass both damage to organs caused by the virus, onset of new conditions (including diabetes, thyroid problems and dysautonomia), activation of latent viruses in the body, and persistent COVID symptoms.

7. There are some unifying theories that might explain all of the diverse symptoms, including the bradykinin theory & the mast cell activation theory, but these have yet to be proven, & until then, we can’t be sure #LongCovid is one thing.

8. Second, some of the most common symptoms that #Longhaulers complain of are not usually symptoms of #MEcfs, including shortness of breath, chest pain, & skin rashes.

9. My 7-year-olds who had chest pain & cough for months do not have #MEcfs. People dealing with dropping pulse ox rates, recurrent cold symptoms, or (like me) weird rashes probably don’t have ME/CFS.

10. While other common symptoms of #LongCovid do overlap with common #MEcfs symptoms, that doesn’t necessarily mean that a) all #Longhaulers experience these symptoms, b) that the nature of the symptoms is the same for both illnesses,

11. or c) that the explanation for the common symptoms is #MEcfs and not one of the common co-diagnoses of ME/CFS patients, such as dysautonomia or Mast Cell Activation Syndrome.

12. Take fatigue for instance. The experience of fatigue can really vary. Fatigue is a big issue for some #Longhaulers, but not for others. Still others (like me) had a period of extreme fatigue but have recovered from it even as other symptoms continue. #LongCovid≠Fatigue.

13. Furthermore, some people who have or have had #MEcfs who have also had #LongCovid have said that the fatigue of #LongCovid felt different. This includes both my husband (who’s had ME for 15 yrs) and @JenBrea.

14. Third, there seems to be some tendency to equate all post-viral conditions ( #LongCovid, post-Lyme, etc.) with #MEcfs. But that significantly diminishes the reality of life with ME/CFS. ME/CFS isn’t just “post-viral fatigue”: it has its own set of diagnostic criteria.

15. The Canadian Consensus Criteria require a patient to have fatigue, post-exertional malaise, pain, neurological symptoms, AND symptoms from two of the following three clusters: autoimmune, neuroendocrine, or immune. https://me-pedia.org/wiki/Canadian_Consensus_Criteria

16. And post-exertional malaise doesn’t just mean “gets tired after exercise.” It means a worsening of symptoms, including symptoms not related to the activity, that often sets in 12-24 hours AFTER the activity and takes a very long time to recover from.

17. Again, SOME #LongCovid patients meet these criteria and are probably headed for a diagnosis of #MEcfs. But that is far from all #Longhaulers and without significant attempts to count, categorize and study #LongCovid, we can’t know how many. #CountLongCovid

18. So why does this matter? For #Longhaulers, the labelling of all #LongCovid symptoms as #MEcfs means that symptoms and medical issues that could be medically treated instead get dismissed as untreatable because “there is no cure for ME/CFS.”

19. For instance, one of the specialists I was referred to told me within minutes of meeting me that he thought all #LongCovid was #MEcfs even though my remaining symptoms – blisters & chest pain – don’t even remotely resemble ME/CFS.

20. (He also told me that the only treatments for #MEcfs were graded exercise therapy and cognitive behavioural therapy which was the moment I gave up on him.)

21. If the bradykinin or mast cell theories turn out to be true, there are medications to treat both conditions. If dysautonomia appears to explain most #LongCovid symptoms, there are medications, therapies and treatment protocols to follow.

22. If #LongCovid turns out to be multiple conditions, it means we are that much further behind in teasing them out, studying them, and developing therapies and treatment protocols.

23. In short, if all #LongCovid is labelled as #MEcfs, that becomes an excuse for doctors and researchers to dismiss #Longhaulers in the way that people living with ME/CFS have been ignored and dismissed for decades.

24. But there is also a very real danger for people living with #MEcfs here and it’s one that we’ve seen play out before to very damaging results. If research studies are carried out that include ppl who do not actually have ME/CFS,

25. The results may not actually reveal anything about #MEcfs but may be imposed on people living with ME/CFS regardless. It’s the graded exercise therapy study all over again.

26. In conclusion, both #LongCovid and #MEcfs patients deserve research, study, medical care, therapy, and treatments. Research into one condition may turn out to help patients with the other. But please stop equating them.