Diagnosed with long COVID instead of ME- will this harm chances of treatment?

[SpinachHands]

My partner's appointment with the local NHS ME/CFS "specialist" clinic finally came around. (None of the doctors are actually ME specialists, just a team of physios, occupational therapists and dieticians.) I did the appointment on their behalf (with their consent) as they are too unwell. My hopes were already low for this meeting, but was somehow even more disappointed- I can get into this on another post maybe.
He said he would diagnose my partner with long COVID, not ME, as that's the likely infection which started their symptoms. I asked him why not ME, and if there's no symptom difference, doesn't it come under the same umbrella anyway? He said the WHO are preferring to keep them as separate diagnosis for now. I said that I was concerned that my partner wouldn't receive adequate treatment, or their severity wouldn't be taken seriously. He said the NHS wouldn't do that, but when I asked about private he couldn't give me any certainty. I'm only so worried as I see a lot of private doctors and treatments that list ME/CFS as a condition they treat, but not long COVID. Has anyone experienced any issues around these lines? My partner's condition is profound/very severe, and they have been 100% bedbound for months, unable to sit up, eat solid foods, or do anything without my help, which I don't hear about in cases of long COVID as much as I do ME.

 

[Treeman]

Do you have a local ME/CFS service? Try to find one you may still get a ME diagnosis.

The best thing you could do is to treat the symptoms, either diagnosis should do that.

Good luck.

 

[hapl808]

I'm only so worried as I see a lot of private doctors and treatments that list ME/CFS as a condition they treat, but not long COVID. Has anyone experienced any issues around these lines? My partner's condition is profound/very severe, and they have been 100% bedbound for months, unable to sit up, eat solid foods, or do anything without my help, which I don't hear about in cases of long COVID as much as I do ME.

As Treeman says, they're only going to treat symptoms anyways. I'm not familiar with NHS stuff, but I'm pretty sure that private doctors don't have restrictions on what they can treat since it's outside of NHS. In the US, there's a lot of crossover between MECFS and Long Covid doctors. If anything, I think cases are taken more seriously as Long Covid, whereas more doctors just completely disbelieve MECFS. But that may vary depending on doctor and region.

I've definitely heard about a number of LC cases of that severity on Twitter. Obviously the most severe people aren't around much, but there are lot of levels of severity.

 

[Bluebluesky]

I think cases are taken more seriously as Long Covid, whereas more doctors just completely disbelieve MECFS. But that may vary depending on doctor and region.

That's what I would think too. Long Covid is more "legitimate" in the doctors world and you and your partner might get treated better and gaslighted less. To a certain degree you just have to let the doctors believe what they want as long as the treatment they offer isn't harmful, since they know so little about it. And just know inside that you know more about it than them.

And you might still be able to get the ME diagnosis elsewhere.

 

[SpinachHands]

Do you have a local ME/CFS service? Try to find one you may still get a ME diagnosis.

The best thing you could do is to treat the symptoms, either diagnosis should do that.

Good luck.

This was the local ME/CFS service 😅 And the only treatment they offered was a YouTube link to bedbound exercises and a referral to a dietician with an 8 month wait

 

[Bluebluesky]

This was the local ME/CFS service 😅 And the only treatment they offered was a YouTube link to bedbound exercises and a referral to a dietician with an 8 month wait

Aw, I thought it was the GP. I can understand that you are a bit shocked then. It seems to me that you are doing all the right things in this difficult situation. Just keep trying, keep finding out what opportunities you have, keep reading and asking for advise in here. There's got to be something and someone that helps somewhere. Sorry, it's all I can say.

 

[Jyoti]

I am wondering if @Countrygirl might have some thoughts. I am not sure, but I thought it was worth tagging her.

 

[Wishful]

IMO it won't harm the chances of treatment, because there is no treatment for ME yet. Some clinics or doctors may claim to offer treatments, but I haven't heard of any that convince me that they actually do provide any reliable treatments.

A long-covid diagnosis might provide better access to services (whatever is needed for bedbound patients), if the NHS does provide any such thing.

 

[hapl808]

This was the local ME/CFS service 😅 And the only treatment they offered was a YouTube link to bedbound exercises and a referral to a dietician with an 8 month wait

That's why I feel the LC diagnosis could be more helpful. A lot of ME/CFS stuff is a joke. So unless you have access to one that does real treatments, you 'may' have more luck with someone trying to treat LC. But the main thing is to try to figure out what they offer. The exercise type are useless, so you need someone who will guide medication, supplements, strategies. Of course, easier said than done. I've never found one that I consider all that useful, and I've seen some well regarded specialists or at least discussed my case with them.

 

[Zebra]

Hi, @SpinachHands

As others have said, I don't think this change in diagnosis will harm your partners access to care and treatment.

Here in the States, I feel like Long COVID is considered a more legitimate disease than ME/CFS for myriad reasons.

At Stanford University, where I get my ME/CFS "care", I was *shocked* by how quickly Stanford launched and combined a Long COVID Clinic within the ME/CFS Clinic, thus worsening access to the few physicians and physician assistants who look after ME/CFS patients, with increased wait times between appointments, strictly cookie cutter treatment plans, etc.

Honestly, given the burden of Long COVID disability on the economy, I think employers and disability insurers are probably lobbying hard for national research funding to treat/cure Long COVID patients. I would wager that effective treatment plans for Long COVID will come much sooner than for those with ME/CFS.

Best of luck to you and your partner.

 

[BrightCandle]

In the NHS in the UK there are no treatments for either. They can only apply approved treatments for the condition and that would be CBT and exercise, which were meant to be banned but all the Long Covid clinics are just rebadged CFS clinics staffed with Physios. There are no real trials going on in the UK for either disease (other than DecodeME but that has now closed) so really it makes no difference. About the only places you can get symptom relief treatment is Dr Claire Taylor for POTS and MCAS and that is about it. So I don't think it harms you in anyway at this point, either diagnosis will mean anything else you might get will be blamed on Long Covid and refused treatment anyway. The situation remains dire in the UK and the diagnosis will be used to deny you healthcare regardless.

 

[SpinachHands]

That's what I would think too. Long Covid is more "legitimate" in the doctors world and you and your partner might get treated better and gaslighted less. To a certain degree you just have to let the doctors believe what they want as long as the treatment they offer isn't harmful, since they know so little about it. And just know inside that you know more about it than them.

And you might still be able to get the ME diagnosis elsewhere.

That's a relief to hear, despite it still being dreadful for those with an ME diagnosis. I was worried it would be the opposite as many private clinics list ME/CFS under illnesses they treat, but not Long COVID. I guess it's probably more that they haven't updated their websites in a few years...

 

[SpinachHands]

In the NHS in the UK there are no treatments for either. They can only apply approved treatments for the condition and that would be CBT and exercise, which were meant to be banned but all the Long Covid clinics are just rebadged CFS clinics staffed with Physios. There are no real trials going on in the UK for either disease (other than DecodeME but that has now closed) so really it makes no difference. About the only places you can get symptom relief treatment is Dr Claire Taylor for POTS and MCAS and that is about it. So I don't think it harms you in anyway at this point, either diagnosis will mean anything else you might get will be blamed on Long Covid and refused treatment anyway. The situation remains dire in the UK and the diagnosis will be used to deny you healthcare regardless.

I hasn't heard of Dr Taylor before this, thanks for mentioning her- she seems to have a short wait too so could be helpful! But yeah navigating most medical experiences is going to be like repeatedly running into a brick wall with either diagnosis over here on CBT island. I swear CBT is the adult version of "put a wet paper towel on it" that school nurses used to use for everything 😅