News about Long Covid including its relationship to ME/CFS 2020 to 2021

[Esther12]

Where do I suggest that you look at all NIHR's funding decisions?

Seeing as there are no specific NIHR projects for Long Covid to look at the only way to make any sort of judgement about how promising or not the idea of the NIHR stepping into Long Covid is going to be is by looking at past NIHR projects. Even just a casual look suggests that they've got things wrong with ME/CFS.

And then in that interview Dolphin reported that Dr Elaine Maxwell of UK NIHR "says we have existing ways to treat brain fog and psychologists have a number of strategies and we have learned a lot from other postviral syndromes such as ME". Again, that doesn't sound hugely promising to me.

With respect, I think that is a ridiculous statement.

At least it is with respect.

If I turn it around, you are saying that your preference would be that DecodeME wasn't funded if it meant that Crawley wasn't funded either (not that the two things will ever be linked in that way).

Yeah, I think it's likely that would be better.

I hadn't considered @Invisible Woman's point about some people here, including you, being involved with DecodeME. I don't mean to insult your efforts but it's incredibly difficult for me to think of any sure fire research for improving patients lives. I'm hoping for the best with DecodeME but who knows if we will get lucky with it or not?

 

[Trish]

I think the value of any research funded for long Covid will depend entirely on who gets the funding. If Chalder, Moss-Morris, Loades and chums get their sticky fingers on the cash, the long Covid patients are doomed.

 

[Jonathan Edwards]

Yeah, I think it's likely that would be better.

I agree with Andy that this is bonkers, irrespective of who is involved in what.

Crawley's research does not actually do that much harm, I suspect. It is a symptom of a way of approaching ME/CFS, not a cause. If she left the field overnight the remaining clinicians would carry on as before. The research itself actually goes nowhere. Nobody outside the circle of followers takes any notice of it at all. I certainly don't and would not have done if still practicing. The clinical practice is bad because a field of medicine where nobody knows what to do gets populated by people who have no idea what they are doing.

On the other hand Decode ME will give us a powerful piece of information about the genetic component of ME, whatever the result. It cannot fail to give a hugely useful piece of information - the sort of piece that people like myself have leveraged to build a viable disease model. If specific genes come up they will point clearly to specific mechanisms. if they do not that equally points away from mechanisms, which is in many ways more powerful.

The MRC asked me to advise on what was worth funding, together with two US researchers. Of the suggestions on offer the GWAS seemed clearly the one thing worth doing. And it has been funded.

In science you have to forget the political infighting around you and get on with what is worth doing. Most of the money goes to garbage, with results churned out on what might as well be toilet paper. Forget it. It falls under the same heading as merchandising T-shirts sold by sportswear companies. It has no long term impact. Finding a gene does.

Moderator note:
This post has been copied and some following posts moved to a new thread:
Does the new ME/CFS research of BPS proponents affect anything much now?

 

[Simbindi]

If we could get this kind of input at the beginning of the journey, just think how many mistakes we could cut out, how many shortcuts we could take.

If the consultant who diagnosed me with CFS/ME/PVFS (he used all the terms in the consultation) in the presence of my (now ex) husband had spent time explaining the severity of my condition to my partner the absolute need for practical and emotional support, that he needed to take on more responsibility in the family and supporting his children etc., because as an M.E. sufferer I was actually physically unable to do this work, then that would have made the most difference to both myself and even more importantly, the subsequent lives of my young daughters (at the time of diagnosis 4 and 2 1/2 years old). Instead the consultant trivialised the condition at the time when it was being described as 'Yuppie Flu' in the media. He said he had never had a patient with the condition who hadn't recovered within 18 months (by the time I saw him I had already been ill for over 18 months). It's traumatising for me to think back to these years and what happened after this 'turning point', but it included severe emotional abuse and physical domestic violence.

 

[Dx Revision Watch]

https://www.washingtonpost.com/heal...7c5324-0712-11eb-9be6-cf25fb429f1a_story.html

With long-haul covid-19, important advice for patients, doctors and researchers

By Julie Rehmeyer, Jennifer Brea and Brian Vastag
Oct. 24, 2020 at 2:15 p.m. GMT+1

(...)

"Online patient [link is for https://www.meaction.net/covid-19/] groups [link is to private Facebook group https://www.facebook.com/groups/COVIDLongHaulers] are invaluable for finding patients to learn from and for companionship on the journey, but use groups with caution, since they can devolve at their worst into pseudoscientific echo chambers."

 

[Andy]

Warning for COVID Long Haulers From Polio Survivors

Polio is considered a disease of the past. A vaccine for the virus that causes it was developed in the 1950s, and the disease was eradicated in the United States by 1979. But there are still up to half a million polio survivors in the country. And, like Eulberg, many of them have developed new pain and disability that can be traced to the disease they thought they had recovered from decades before — a condition that has become known as postpolio syndrome.

It is still an under-researched and poorly understood syndrome. There's no definitive way to diagnose it, its cause remains unclear, and no treatment is known to slow or halt its progression. Yet there are effective ways to manage symptoms, say physicians who treat postpolio patients.

The mainstay of treatment is rehabilitation and exercise therapy, usually involving a multidisciplinary team of medical professionals. But it has been difficult to establish an evidence base for even this. For example, researchers in the Netherlands conducted a randomized trial to see whether physical training or cognitive behavioral therapy were effective for patients with postpolio syndrome. Neither intervention helped patients preserve muscle strength or functioning.

Lessons for COVID Long Haulers

Despite underwhelming results from studies of treatment for postpolio syndrome, many clinicians who treat these patients are upbeat about their ability to make a difference in patients' lives, precisely because an individualized approach is possible in the clinic. "It's a really careful assessment of what exactly their activity level is, what they are doing, what muscles they are stressing, what muscles are overstressed, and whether those muscles need rest or protection," said Vandenakker-Albanese. "So sometimes using exercise to strengthen is the solution and sometimes doing less exercise is the solution."

https://www.medscape.com/viewarticle/939596 (Register/log-in to view)

 

[Invisible Woman]

@Simbindi.

A lot of the people I met in the early years who were in relationships faced a similar issue - not necessarily the physical violence though.

Relationships which might have otherwise survived were destroyed as the partner became part of the gaslighting campaign, sometimes believing that by doing so they were being supportive.

One person I met had a daughter with both physical and learning disabilities. When she got sick her partner either wouldn't or couldn't cope and the relationship broke down. With no support & effectively homeless, the only option she had left was to put her child into a special care home to make sure the child's needs were met.



Untold harm to so many vulnerable people.

 

[rvallee]

Slowly starting to see reports of medium-term remissions followed by relapses months later, usually remission around month 3 or so followed by a relapse at 6-7 months. It's a trickle but it's growing. People who had initial symptoms, thought they were recovered for weeks, even months, and relapsed again, usually framed as having done too much, not pacing enough. Expected, given that the advice to rest and pace hasn't made its way officially.

There has been a similar early pattern, people being sick, getting better after a few days, then sick again. But this is after weeks and months, 3 months, 6 months later. Also lots of remissions/"recoveries" at around 6-7 months so there are good and bad news but the bad news are of the type to get lost easily.

Honestly the standard tools to medicine cannot function here, this fluctuates and varies too much. It's more like predicting weather, chaotic and with wild variations that cannot be predicted. This needs large-scale and very richly funded longitudinal research that is almost obsessive with recording every bit of information.

 

[Simbindi]

@Simbindi.

A lot of the people I met in the early years who were in relationships faced a similar issue - not necessarily the physical violence though.

Relationships which might have otherwise survived were destroyed as the partner became part of the gaslighting campaign, sometimes believing that by doing so they were being supportive.

One person I met had a daughter with both physical and learning disabilities. When she got sick her partner either wouldn't or couldn't cope and the relationship broke down. With no support & effectively homeless, the only option she had left was to put her child into a special care home to make sure the child's needs were met.



Untold harm to so many vulnerable people.

From this point of view, I am glad the 'Long Covid' is currently being taken as a physical problem and being recognised by the establishment as more than anxiety. The possibility of domestic violence after a partner develops Long Covid hasn't really been discussed in the media, just the existing domestic violence that has increased as a result of the lockdowns. Edit: Also the issue of family breakdown and the subsequent effect on families and children.

I never sought help from a social worker to try to get the support I needed as a mother because of the fear of my children being taken away and stayed far too many years in the relationship because of the fear of homelessness (at the time we had a mortgage which was in my ex-husband's sole name). I didn't have the cognition or physical energy to try to learn how 'the system' worked, and back then there wasn't the information on the internet there is these days.

When I finally did start divorce proceedings my ex, as I had predicted, did try to twist everything to the initial CAFCASS officer. I was shocked when I first saw her that she was under the impression the children were living with him, not myself, and that his mother and sister had provided all the child care throughout our marriage! Then she started blaming me for the domestic violence. It was horrific. I made a complaint only to discover that at that time there wasn't even a formal complaints process for CAFCASS (the court appointed social workers). But I got the manager to agree I needed a new, unprejudiced CAFCASS officer and fortunately the new one was very experienced and was able to see through the lies. If I hadn't had both the emotional and financial support of my eldest sister I can't begin to imagine what would have happened to me and the girls.

 

[Kitty]

This needs large-scale and very richly funded longitudinal research that is almost obsessive with recording every bit of information.

They could have made a good start on this months ago, by updating the symptom tracker in a dynamic way. Allowing people to create and add symptoms; then aggregating those that added up to the same thing described in different ways, as new categories for the main list. They might have hung onto thousands of people who drifted away because they got tired of having to type in their own symptoms every day.

 

[Kitty]

Also lots of remissions/"recoveries" at around 6-7 months so there are good and bad news but the bad news are of the type to get lost easily.

I don't think we'll be able to categorise those who recover after six to eight months as permanently recovered for at least another year or so. For some people, it may be a reflection of the fact that they've become very skilled at pacing as well as getting better control of their symptoms. But if they revert to their previous lifestyle, with job stresses, exercise, family life, etc, there's a risk some of them could keel over again another six months down the line.

(Sorry, I meant to add this to the post above.)

 

[Invisible Woman]

I don't think we'll be able to categorise those who recover after six to eight months as permanently recovered for at least another year or so.

Even then I think it's possible some might experience health problems in 10, 20 years time.

Like some teens who seem to recover but then ME comes back as they hit their 30s.

 

[Invisible Woman]

When I finally did start divorce proceedings my ex, as I had predicted, did try to twist everything to the initial CAFCASS officer. I was shocked when I first saw her that she was under the impression the children were living with him, not myself, and that his mother and sister had provided all the child care throughout our marriage! Then she started blaming me for the domestic violence. It was horrific.

Nice.

I think that's one of the many injustices with a diagnosis like ME where it is seen as acceptable that the medical establishment and the state can gaslight you with impunity.

It leaves people very vulnerable to all sorts of other lies and manipulation in all sorts of areas of their lives with potentially drastic consequences.

Luckily for me I've not been through that level of nastiness but I did have one sibling narcissistic sibling really try to do a number on me and get others involved. Even on the day of mother's funeral I had to deal with personal attacks because I had ME.

 

[Wits_End]

Long Covid curse: More than 1,000 struck down in London as under-50s unable to shake off syndrome

“They have very different starting points but one thing they talk about is fatigue. They talk about a post-exercise malaise. If they do any activity they are shattered for days, sometimes a week.

“They have to pace themselves. They would have done the school run and gone to the shops and to work. Now they can only do one of these things. There are people who talk about problems with ‘brain fog’. They don’t like meeting more than one person at once. They have difficulty in remembering names.

I've just caught up on this via the hard copy. There is a lot of detail in the article about the widely-ranging symptoms which people are suffering from, and even, in the case studies, the odd thing which people have found seems to help their condition.


Also, in the comments, there's reference to a similar article in the Daily Telegraph. Has it been posted? I can find this one
https://www.telegraph.co.uk/health-...ong-haulerswere-guinea-pigs-dont-know-around/
but this is dated today, and those comments were from days ago.

 

[Andy]

"Online patient [link is for https://www.meaction.net/covid-19/] groups [link is to private Facebook group https://www.facebook.com/groups/COVIDLongHaulers] are invaluable for finding patients to learn from and for companionship on the journey, but use groups with caution, since they can devolve at their worst into pseudoscientific echo chambers."

Oh, the irony.

 

[Trish]

Some posts have been moved to a new thread:
Does the new ME/CFS research of BPS proponents affect anything much now?

 

[Shinygleamy]

From this point of view, I am glad the 'Long Covid' is currently being taken as a physical problem and being recognised by the establishment as more than anxiety. The possibility of domestic violence after a partner develops Long Covid hasn't really been discussed in the media, just the existing domestic violence that has increased as a result of the lockdowns. Edit: Also the issue of family breakdown and the subsequent effect on families and children.

I never sought help from a social worker to try to get the support I needed as a mother because of the fear of my children being taken away and stayed far too many years in the relationship because of the fear of homelessness (at the time we had a mortgage which was in my ex-husband's sole name). I didn't have the cognition or physical energy to try to learn how 'the system' worked, and back then there wasn't the information on the internet there is these days.

When I finally did start divorce proceedings my ex, as I had predicted, did try to twist everything to the initial CAFCASS officer. I was shocked when I first saw her that she was under the impression the children were living with him, not myself, and that his mother and sister had provided all the child care throughout our marriage! Then she started blaming me for the domestic violence. It was horrific. I made a complaint only to discover that at that time there wasn't even a formal complaints process for CAFCASS (the court appointed social workers). But I got the manager to agree I needed a new, unprejudiced CAFCASS officer and fortunately the new one was very experienced and was able to see through the lies. If I hadn't had both the emotional and financial support of my eldest sister I can't begin to imagine what would have happened to me and the girls.

My mum effectively hid me and my brothers. She didn't go looking for help. As she was ill (as well as us three) she knew there was a high risk of us being taken away. My dad wasn't terribly understanding and it caused a lot of stress. If the doctors and school had supported us it would have made a big difference. When you have a disease that requires you to avoid all stress, the irony is that the way ME folks are treated is more stressful than usual. We need specialist consultants for m.e.and long covid folks, they have a specialism and authority that is unsurpassed!!!

 

[Mij]

Even then I think it's possible some might experience health problems in 10, 20 years time.

Like some teens who seem to recover but then ME comes back as they hit their 30s.

The EB virus can develop into autoimmune diseases and cancer years from now. Some never fully recover and continue to experience less stamina. Look at HPV, and how some strains develop into cervical cancer 15-20 years down the road if not detected and treated in the early stages.

Where would we all be if we received proper treatment early?

 

[Dx Revision Watch]

I caught the tail end of a radio Scotland show today whilst dropping car off at garage. Clare Gerrada was advising that she was very fatigued for 4 months after contracting COVID19, but she got better.

Gist of soundbite being NHS staff affected will have been through significant stress , and we must have the requisite mental health support to help them.
This was the end of a piece and I may have picked it up wrongly, but it sounded very like the perpetuating symptoms trope.

Old wine in new bottles

And she has her new book to promote:

Beneath the White Coat: Doctors, Their Minds and Mental Health

Paperback, Routledge (30 Oct. 2020)

 

[Snow Leopard]

Seriously amazed that an actress (not to put down the profession, but experts are supposed to do better at this) actually legitimately understands this disease better than 99% of physicians and 100% of the people who are currently presented as the subject-matter experts, and it's not even close. Shows what a little empathy can do, that technical skills and rote memorization don't mean much if people simply don't care to understand the actual experience because it's not the way medicine works.

I'm not surprised - those "experts" are selected for their support of the status quo, not for their ability and allegiance to listen to those who are directly affected. Jennie Jacques on the other hand has been hired specifically to listen to patients and will lose her position if she does not.