Why are we so quick to judge ME/CFS recovery stories?

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As a community we are very good at supporting each other especially when one of our own is having a particularly bad time with their health. But one thing I’ve noticed, that I find disheartening, is that we don’t give people a safe platform to be open when their symptoms improve. People seem scared to share recovery stories for fear of being judged or told “you didn’t have ME/CFS in the first place”.

We should embrace these stories of hope rather than reject them. We should be elated for anyone that is experiencing a period of remission. We should collect these stories to see what we can learn from them.

Instead people are hiding in the background because they fear a backlash if they are open about their remission.

There have been a couple of incidents recently that have prompted me to write this. The most high profile case is that of Jen Brea. Jen has courageously shared her journey in the hope that it will lead to a better understanding of ME/CFS. But she has faced backlash from the community which she has spent so much time and energy supporting. I have been disgusted by the way Jen had been treated.

Jen Brea has faced false accusations and abuse

Although the majority of us have total respect for Jen Brea and we appreciate everything she has done for the ME/CFS community, there are a minority that have taken this as an opportunity to attack her. Personally, I am so happy that her health has improved and she is able to start to enjoy life again. Why can’t others be happy for her too?

Jen has faced accusations and downright abuse, some claiming she didn’t have ME/CFS in the first place, and others accusing her of promoting potentially dangerous and invasive treatments. Others berating her for insinuating that spinal surgery is a cure for ME/CFS (which she most certainly hasn’t). While others are saying she is perpetuating myths about ME/CFS. And others claiming it was all a big publicity stunt and she was never ill in the first place. All of these are ridiculous claims.

Whenever I see these comments I’m quick to defend Jen, but I don’t understand where this animosity comes from.

Jen has never said spinal surgery is a cure for ME/CFS. And she hasn’t suggested anyone else should have such major surgery. She has openly discussed her particular case, even though she knew doing so would open her up to a lot of criticism (and it certainly has). She’s sharing her story, in a lot of detail, in the hope that something can be learned from it.

ME/CFS is a complex multifaceted condition. We are all aware that when one treatment appears to be successful for one, it can be ineffective, or even detrimental to another. But we all want the same thing, correct diagnosis and effective treatment.

If Jen’s story gives important clues into this debilitating illness, and members of our ME/CFS community, even a few, find relief, that makes my heart fill. Of course the science behind this remission now needs to be studied.

We all need to congratulate Jen Brea on her remission, not play armchair doctors and accept there will be maybe many causes of ME/CFS and keep an open mind, and never doubt anybody’s diagnosis. Let us just be supportive to others with this monster of an illness.

People fear being open about their remission

Another case was a question posed on ME Association’s Facebook page. This was from a person that isn’t high profile within the community, but who felt unable to be open about their remission. So much so that they wanted to remain anonymous. It saddens me that we have created such a negative barrier that people feel scared to share their good news.

This person explained that she has had ME/CFS since 1995 and has fluctuated between mild and moderate. After suffering for a number of years she now feels like she is in remission, following some lifestyle and diet changes. She stated:

“There are a few little things remaining in a very minimal way, but I feel so amazingly well, something that I have only felt once before but this time even better.

I hope it lasts, however, I feel like if I say anything publicly I will be accused of being a fraud or not having ME in the first place as most people get angry if you even suggest that this is even possible.

I don’t think I am cured or anything, I just class it as being in a state of remission, but I don’t even know if that is technically possible.”

Why are we suspicious of ME/CFS recovery stories?

I find it sad that as a community we make it difficult for people to share their recovery stories. People should not fear celebrating their victories. We experience so much trauma and grief within the ME/CFS community, these happy moments should be welcomed.

So why do people feel unable to celebrate publicly? Why, as a community, do we not embrace this positivity? Why do we act so defensively when these good news stories are shared?

I personally have been sick now for about 18 years, although I only became bedbound 6-7 years ago. I have tried a lot of different treatments over that time, but the most beneficial thing for me has been embracing acceptance and letting my body rest. Listening to my body and respecting it has brought about the most improvements.  

I’m probably as guilty as the next person about being sceptical when I hear stories of remission, especially when they are based on lifestyle changes. This may be because I have tried so many things and they haven’t worked for me.

But what we have to remember is we are a diverse bunch. What works for some doesn’t work for others. ME/CFS is a complex condition and until we know more about the causes shouldn’t we keep an open mind?

As long as that person isn’t forcing their views and treatment practices on us, I cannot see why we are so reluctant to let these people speak.

I understand people’s concerns about false claims. We are often targeted by scammers promising “Miracle cures” and we have to protect our community. But there is a big difference between scammers preying on us and genuine individuals sharing their stories of remission.

Why can’t we accept that some people recover? Or at least that some people go through periods of remission. Surely we can learn so much from their stories?

Maybe years living with ME/CFS has hardened us and made it impossible to hope for a recovery? Hope can be a scary thing when you have been so ill for so long.

Maybe our own desperate situation makes it hard for us to celebrate other people’s good news? Maybe years of hope being crushed by numerous setbacks and deteriorating health does not permit us to even contemplate a healthy or happy future for ourselves? Maybe it makes us feel like we aren’t trying hard enough?

Or are we just being protective of a community that has been judged so severely over the decades?

I’m not sure what the true reason is, but what I do know is; Everyone wants the same thing .. to be well again. It’s ok to be a bit sceptical about treatments but it’s not okay to bash anyone about their own personal journey.

I want to be part of a community that supports all its members, through the bad times and the better times. Is it time to create a safe place for people with ME/CFS to share their recovery stories without fear of judgement?

What are your thoughts?

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EDIT: I knew when I wrote this post that it would attract a lively debate and some negative comments. But I didn’t realise to what extent people would object to the message. I understand people are sceptical about recovery stories and we need to protect our community from scammers looking to sell us miracle cures. We also need to make sure ME is seen in a realistic light in the media, and sadly journalists often publicise stories of remission as cures. There is no cure for ME (yet) and I have been very careful not to use this term in my post.

But some people with ME do experience periods of remission, sometimes many years, and we need to give these people a safe platform to discuss their stories without fear of judgement. I am not talking about a platform in mainstream media, I’m talking about a safe environment within our community.

Since publishing this post I have been contacted by numerous people who themselves are experiencing improved health, and some are in remission. But they all contacted me privately rather than comment on my post because they fear a backlash if they are open about their recovery. I think this is so sad. These people are not scammers looking to force their views and treatments on us, they are just individuals who for whatever reason have experienced improved health.

Imagine being part of a supportive community for years and then either being rejected by that community because your health has improved, or being so scared of the backlash that you have to keep your good news a secret. I understand sharing these stories has to be done in a sympathetic way, but at the moment we are not even allowing these discussion to take place. Surely we can learn from these individuals?

I understand that hearing these stories can be upsetting for people who are still severely ill. I understand because I am one of those people – I have been bedbound now for 7 years. But the default response to stories of remission is “they didn’t have ME in the first place” and I believe this is a dangerous response. We do not know exactly what causes ME and there isn’t a definitive test for it, so how can we adopt a blanket response that dismisses these individual’s stories and invalidates their voice?

This is of course just my view and everyone is entitled to have their own opinion on this matter. But people do not have the right to attack others just because they experience improved health – personal attacks are not ok.

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  2. Jo Moss
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  1. I am so happy when I hear of recovery. I think it offers hope. And I agree that people shouldn’t be bashed for sharing recovery stories. But I think there is a place for them, and it’s not in mainstream media.

    We are working hard to raise awareness of the severity of this illness and our need to be heard and believed, the need to be taken seriously, and then the media posts a story about somebody who just ate clean or just had surgery and got better.

    Healthy people see that as something easy to resolve, what’s all the fuss about then? Why should they care about our cause?

    When in reality those people have battled years of various treatments and protocols and routines to finally recover. Their story is likely way more complex. But the media never portrays the whole process.

    I think recovery stories belong in closed support groups, where they can offer hope to the community, but not undermine the advocacy that we work so hard on.

    In my opinion, recovery stories should be reserved for pwME, not for healthy people, many of whom will pass judgement because they haven’t experienced this monster themselves.

    1. I think the problem there lies with the media not the person sharing their story. Sadly I know how journalists work. I’m the first to cringe when I see “woman cures ME with diet alone” type stories. In fact anything with the words “cured” ME should not be allowed. But sadly the stories I’ve mentioned in my post are based within the ME community, not sensationalised stories in the press. I know we want to protect our community but this should not be at the expense of alienating certain members.

    2. I feel exactly like you! It’s not that I can’t be happy for Jen Brea or anyone else that has got better or even feel that they are cured, but every time a story like that is in a newspaper or gets big in social media etc. I have to listen to a bunch of people telling me that all I have to do is drink this juice or asking me if I have really done this MRI because that’s the solution! And not only this, but also the athoroties gets even more suspiscious about if I realy try hard enough to get well, because others have, and they can work full time jobs. So I can lose my social benefits or pension over this.
      I’m sorry for my poor skills in English since I got ill. I used to be a teacher.

    3. I am happy to read accounts of ‘recovery/remission for people with ME!! However, the enormous publicity that J. Brea has received is someone troublesome for the following reason. Jen’s ‘recovery/remission’ is being seen, by many, as THE answer for ME patients. This is far, far from the truth!! It worked for her (after enormous effort/money/assistance on her part.)..she is phenomenal)) Most of us are not ‘phenomenal’ in any sense of the word!! Perhaps a better approach going forward would he to try to ‘ferret out’ the precise reasons for Jen’s illness trajectory and subsequent recovery, and how others of us have experienced the same or very DIFFERENT pathways.

      1. I have to disagree. No one is seeing Jen’s recovery as THE answer to ME. But rather a possible answer for a sub group of us who experience neck problems. Since Jen spoke out about her Cranio Cervical Instability (CCI) many of us with ME have been through investigations for this. She is not an exceptional (phenomenal) case. My cervical MRI shows probably CCI and I know of at least 50 other people with ME who have since been diagnosed with CCI or AAI. This shows a probable cause for at least a sub grouo of ME patients. Shouldn’t this be enough for it to be explored further? I don’t think CCI caused my ME (my neck problems started later) but it has definitely caused me to detiorate from moderate to severe. All this aside, whatever the outcome, we should be celebrating if any one of us experiences improved health – people should not be attacked for speaking out.

  2. People with ME have to go through the 5 stages of grief, just like anyone with an impairing chronic illness does.
    The 5 stages are – Denial, Anger, Bargaining, Depression, Acceptance.
    Just like anyone in this fix, some people are, in time, graced with acceptance of themselves and others, whilst others become stuck in rumination and bitterness.
    Id expect the majority flit between the stages of grief, especially during temporary or partial remissions, that later progress back to illness.
    Wherever someone is, is what they will project out into the world.
    A persons anger about their illness, or past judgment of a community, displays itself as anger towards an-other, or themselves.
    Where defending the group is concerned, there is a difference between reuminating on the past and displaying it as a hostility – and acting to positively influence the future with the past events as the driver.
    I wouldnt deny anyone their anger, or depression or grief or scepticism, but as we all know from the comminity or from outside of it, a hostile person generally makes us wither and feel lower than if we had not experienced that hostility or undue harsh judgment.
    Noone is perfect, and noone will ever keep their resentments perfectly to themselves – and some people dont even realise they are doing it and it has become a part of their personality – I call them compaliners and I am not limiting that to any community, they are everywhere!
    I try my best to have compassion for those who project onto others. They fully deserve their right to express themselves as much as anyone else. And at the end of the day, they are showing how they feel inside. And thats why, as hard as it is, we must give even more understanding to these people.

  3. I’ve progressed significantly but have been informed many times by someone in my ME group that I wasn’t that ill to start with. It’s this kind of attitude that makes me want to turn round and lash out verbally as I went through hell for a long, long time. I’ve kept my cool so far but it’s extremely hurtful to hear someone in the community downplay your experience. I’ve tried most things going to get well and I’ve improved incrementally over 11 years to the point where I walk my dog every day, work 4 days a week, go out for drinks and can even go the gym sometimes. I understand that this is a dream for many (as it once was for me) so I’m always happy to share everything I’ve tried in case it helps someone else.

    1. I’m sorry you have experienced these types of comments. Unfortunately it seems to be quite common. I’m glad you are experiencing a period of improved health and I hope it continues for you. Take care.

  4. This doesn’t just happen with ME. I’ve seen it with other conditions too. If someone says they’re feeling better or they’re not taking meds and trying to cope using other methods, there are often comments suggesting they don’t really have the condition. Or ‘you’ve not felt the real monster yet’ type of comment. Often there is a reason for not taking meds – normally alleries or bad side effects. I am wary of snake oil sellers, and can normally sniff them out. But like you, I’ve seen it happen to genuine people.

    It’s pretty sad. Nobody with a health condition likes to be judged, but often some are quick to judge others. I never understand it.

    I also never understand why people can’t be happy for someone who recovers or goes into remission. In my mind, that should be a call for celebration. It brings hope to other sufferers surely? It shouldn’t bring questions.

    1. It doesn’t surprise me that this happens in other chronic health communities too. I find it so sad that we can’t just be happy for people that experience improved health.

  5. I myself am one of those people who spontaneously went into remission in the past and had periods of almost normal functioning. I could never pin point what caused my remission. I crashed 2012 quite badly and was moderate and went to severe and am now on the up to moderate again. I once were on a page where the thread was about remissions and there were quite a few people who had the same experience as me. Remission is possible. One does not always know why and oh yes I meet all the criteria for a pwME and have been diagnosed with it. There are a secret part of me still hoping for a period of remission again but reality is telling me this might not happen.

  6. I have gone into remission several times, and each time I got better faster because I learned how to heal. Not through any prescriptive plan, but I learned the mindset I needed to heal. And what I found was that each time I needed *completely different things* to heal. Except for extreme rest + mindset, the treatments I needed were all different.

    But that doesn’t make my story irrelevant. In fact, it feeds into the narrative of most recovery stories – we each are on a personal journey to find what we need to heal. This will be true as long as science is trying to understand us.

    Over the past several years I have tried many times, in many ways, in many channels to share my recovery story. And everywhere I have been met with criticism, doubt, and minimizing. It’s disheartening.

    And yet, it feels fundamentally important to me to share my story and to spread the healing mindset.

    It’s so so so emotionally draining. I understand why so many want to/NEED TO share their stories, and yet do so under anonymity.

    I see the need to create & manage a safe space for others. So now I’m wondering, what should that look like?

    What would it look like to host a space that’s safe for those in remissions and also useful for those who aren’t?

    Could it be somewhere people can present their stories themselves, but in a more protected way than through their Facebook profile? Would they be willing to be interviewed? To do recorded phone calls? To do Q&A’s?

    How do we create a feedback loop of respectful, constructive dialogue between the ill and those in remissions while weeding out the hurtful attacks?

    Does the community even want this?

    1. My hope would be that people could share their stories in spaces that already exist within the ME community, but I’m not sure people would feel safe doing that. Someone did mention a Facebook group that already exists where people share their recovery stories but I can’t find the link now.

      1. I agree the ideal end state is everyone feels comfortable sharing their stories in whatever communities they joined while still ill.

        But until we reach that level of inclusion, I see a need to create moderated “safe spaces” for sharing stories of remission and recovery.

        And perhaps by creating those thoughtfully, we can shift the community’s thoughts and actions by showing what we can gain from these stories.

        But again, I don’t even know if very many people want this today. From your reply, it sounds like you don’t, Jo. Do I have that right?

  7. This is a great question and I’ve been wondering about this phenomenon myself. I would think that there are many possible answers, including jealousy and anger.
    My understanding, from observing these types of negative reactions in myself, is that much of it is to do with being chronically ill. We don’t have our full faculties so we’re unable to think clearly and also, our emotions are messed up. My explanation is not very elegant, sorry. It did seem more reasonable and relatable when I was pondering it.
    One thing I’ve noticed in general situations, is that quite often my initial reaction to a situation is a negative one. Whether it be news about ME, poor driving decisions by a fellow road-user, good or bad news from healthy folks – I find my initial internal response is often negative. What’s been good for me more recently, is if I linger on these thoughts for a small amount of time, they dissolve and are replaced by a more positive perspective. But this isn’t always the case, and at those times I can’t find a positive perspective or at least neutralise my anger/frustration/etc, I’ve come to learn that my perspective is still valid for myself but that spewing it forth won’t benefit anyone.
    Soooooo, I think a lot of what’s wrong is that when these kinds of negative reactions occur in outspoken people, then they are spurted out without consideration to how ugly they are and the fact that they aren’t even formed on the facts of the situation.
    AS to the whole ‘she didn’t have ME/CFS’, well I think this is a possibility. Given that ME/CFS is currently a diagnosis of exclusion and there seems to be quite a few eminent researchers who believe there are different sub-types of patient, we can’t rule out the possibility that there are various medical conditions causing similar yet distinct clusters of symptoms that are all currently defined as ME/CFS. Jennifer’s Brea’s treatment for CCI/AAI and recovery means that it’s possible that none of us have ME/CFS, but may have one or several diagnoses of conditions that have not yet been defined/discovered. I believe this is a very rational and reasonable train of thought. That said, there is also the possibility that CCI/AAI is just another mechanism to the end-state known as ME/CFS, and maybe the other conditions that lead to ME/CFS share a common pathway.
    In short, it’s just angry folks (some justifiably so, others perhaps due to it being their nature whether ill or not) and it should on the whole be ignored.

  8. I agree the ideal end state is everyone feels comfortable sharing their stories in whatever communities they joined while still ill.

    But until we reach that level of inclusion, I see a need to create moderated “safe spaces” for sharing stories of remission and recovery.

    And perhaps by creating those thoughtfully, we can shift the community’s thoughts and actions by showing what we can gain from these stories.

    But again, I don’t even know if very many people want this today. From your reply, it sounds like you don’t, Jo. Do I have that right?

  9. Thank you for writing this. I experienced a seven-year remission, or what I called relative remission, because I was still wiped out all the time but able to lead a normal and full life including exercise regularly. Then it all came to a screeching halt when my ME disease came roaring back. That was 28 years ago. But I did have a seven-year remission.

  10. Thank you for your wonderful text, very true, very important!
    “We should embrace these stories of hope rather than reject them. We should be elated for anyone that is experiencing a period of remission. We should collect these stories to see what we can learn from them.”
    This is precisely what our organization has tried to do. We now have an organization with about 200 members of people who have recovered and their loved ones.
    See Recovery Norway: https://www.recoverynorway.org/about-us/why/

    Recovery Norway was initiated in 2017 and formally established as a Norwegian organization in 2018. It was expanded as an international network in 2019 and we are now publishing English translations and texts on a weekly basis. Some of our members have been gravely ill.

    Recovery consists of people who have recovered from ME/CFS (myalgic encephalopathy or chronic fatigue syndrome) and similar health issues. Its mission is to create understanding of the health problems as well as justified hope of recovery based on our members’ stories, experiences and insights. We believe this can lead to solutions to illnesses that are often presented as ‘mysteries’ of health and disease.
    Recovery wishes to help those suffering right now through the insight of those who have put their suffering behind them. Their insights are key to making progress. Recovery can be seen as a project of public enlightenment run by people who have themselves had the problem and recovered. The goal is to help individuals and improve population health through hope and first-person knowledge of what causes and improves the problem.

    An organization consisting of people who have recovered is unique and original on an international level, and might also seem a bit strange. However, the establishment of Recovery is important and takes place in a time where a lot of people are suffering while the stories of those who have recovered – stories that may hold the key to better help in the field – are hardly heard.
    The foundational idea behind Recovery is that those who have recovered from these illnesses have a unique insight into what the health problem is about and how one gets well. We believe that, in the stories of our members the solutions to what are often presented as ‘mysterious’ conditions can be found and further researched. We have the ability to provide both justified hope and understanding of the problems experienced by those suffering today.
    At the same time, we see that the stories of those who have gotten well tend to disappear from view. The media tends to focus on the stories of those who are still ill. One important reason why you don’t hear from those who have recovered, is that people typically have an overwhelming need to put their illness behind them and just go on to live their life. It takes altruism and genuine concern for those who are misled into thinking that there are no solutions to continue to be associated with one´s worst nightmare. Secondly, we are sad to say that we who have recovered are too often met with highly negative reactions. ME/CFS patient advocacy groups focused on ‘proving’ that the cause is a “physical” bodily defect people can do nothing about, tend to ignore or discredit recoverers. Understandably, the voices of recoverers have been silenced in the past, but Recovery changes this by providing a supportive environment for those going public with their recoveries.

    We understand that ME/CFS – for example – is a sensitive issue. Many of us have ourselves experienced the misery of being sick and unable to work, but having no one believe us. In short, to those who are suffering today, we see your suffering. We have been where you are. However, we believe we should not be silent of our way out.
    See more on our Facebook site too.. http://www.facebook.com/recoverynorway

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