Prognosis of ME/CFS – by David S. Bell, MD

[Inara]

If they are very sick with the illness all the more reason to donate to the cause.

I would very much like to donate on a regular basis, but I need the money to pay for food, medical care and other fixed costs, like a rent. I believe many more people with (or without ME) might be in that situation, too.

 

[Dolphin]

I would very much like to donate on a regular basis, but I need the money to pay for food, medical care and other fixed costs, like a rent. I believe many more people with (or without ME) might be in that situation, too.

As I have said, I accept that some people don't have the money to donate to research.
However only a tiny fraction of people affected donate so I think there are plenty of people who could donate something but don't.

 

[Dolphin]

I remember one person writing to the group I help run and saying she had no money to donate but at the same time she was asking about a few different therapies. She said she had spent over £20,000 at that stage trying different therapies. This was the 1990s so that would be a lot more in today's money.

Quite a lot of people can spend significant sums on speculative therapies. I'd be happy if a lot of people gave 1% of what they spent on such therapies to research. This would adjust for people's disposable incomes.

We have millions of people affected. One way to use the power in numbers we have is to have more people donate and/or fund-raise.

I'm not saying people need to put themselves in financial difficulties and I accept some people couldn't give anything. But I think from what I have seen in my country a lot of people could donate E5/£5/$5 or whatever in a year but don't.

 

[Jonathan Edwards]

Unfortunately it seems to me you can't rely on people with ME to donate or fund-raise when their health improves.

I have been wondering about all those people who are so loyal to the physicians and psychiatrists who have made them better with CBT and GET. OK one can say that once people are better they get on with their lives and so do not contribute to the online debate and so the online community consists of the malcontents who have not got better and does not reflect the opinion of those who have recovered with therapist-delivered treatments. But surely at least some of these recovered people would want to tell their story and also to fight for the cause of better care? Surely some of them must have struggled for ages before finding 'a good therapist' and would want to campaign for wider availability of ME/CFS services?

How often does one hear one of these people so appreciative of Dr Wessely's or Dr White's care tell their story in public? OK there are some people cured by the Lightning Process who pitch up on lists, but most of them seem to have become Lightning therapists themselves and we do not hear much from those who went to Dr Chalder and/or a physio.

When I went to the CMRC meeting in around 2014 and Peter White gave a tirade about abusive patients I don't remember meeting ANY patients who were appreciative of CBT or GET. I just met people who were sceptical - including three I knew from avatars on the net and of course Charles Shepherd.

Why is it that no patients came to the assistance of the BPS group when OMEGA was launched saying that it was misguided because CBT and Get are jolly good. Some of us felt OMEGA was bad because MEGA might have done some biology. But where are the loyal supporters of the BPS clinicians?

This forum seems to have achieved an environment where anyone can say something reasonable and be respected. I would love to know if there are people out there who genuinely feel their lives were transformed for the better by CBT and/or GET and who would be interested in telling other patients about this in a positive spirit. How many would urge others to donate to BPS research?

 

[Alvin]

Why is it that no patients came to the assistance of the BPS group when OMEGA was launched saying that it was misguided because CBT and Get are jolly good.

Careful what you wish for, you might get it
Since they design their inclusion criteria so loosely they probably get people without ME/CFS at all who did improve and might be happy to claim they were cured

 

[Jonathan Edwards]

Careful what you wish for, you might get it
Since they design their inclusion criteria so loosely they probably get people without ME/CFS at all who did improve and might be happy to claim they were cured

I am genuinely interested in hearing from such people, whatever is wrong with them. If they have suffered and got better then it would be useful to hear the story.

 

[Alvin]

I am genuinely interested in hearing from such people, whatever is wrong with them. If they have suffered and got better then it would be useful to hear the story.

I am curious why. Also they would be used as bludgeons against us.
Not long ago someone posted on the other place who had gone through CBT in the US, after some replies she seemed to unravel, it was not pretty (not her story but her mental state)

All that said some people do spontaneously recover, some probably don't have ME/CFS at all and some are probably depressed and are feeling better (i would get into my views of depression but i don't need more complaints by the forum)

 

[MErmaid]

I hear what you say, @MErmaid, but given that there is no cure for ME, being a fighter is not a solution for many of us. However hard we try to pace carefully, to test different symptomatic treatments, even to experiment with speculative treatments that have not been researched, our health continues to decline.

For many of us, accepting this is how life is for us at present and making the best we can of it is all we can manage. Especially, perhaps, as you say, in the UK and other countries where there is no medical support for many of us because of false beliefs and inappropriate guidelines.

However I don't think this is what David Bell's article is about. I thought his point was that many people who are first ill as adolescents and make some recovery after a few years, do not realise themselves in adult life that their limitations are because of continuing illness, and accept it as 'normal' even though they are far less active than their healthy peers.

As I said in a previous post, how folks decide to live with ME is strictly their business. I didn’t realize you supported psychological theories that apply to PwME? If so, then this is news to me.

Given the circumstances, we all need to make our own decisions about risk vs reward. There is no proof that if we all choose to simply sit around, that this will magically bring ME drugs into our medicine cabinets. Many people are required to take risks and make large financial investments, to get us from point A to point B. So I am a risk taker, doing what I can to get the ball rolling. Meanwhile you can wait for the perfect studies, the proof, or whatever you require to be convinced.

In my life from a very early age, I refused to accept things I did not like as “normal”, if I thought they could be changed or improved. I also spent my entire career working alongside brilliant people who were fearless and felt the same way. I was raised not to accept the status quo., but to challenge it, and improve/change it. I would not fit into Dr Bells theory. I am not a helpless victim waiting to be rescued; that is not my “normal”.

 

[Jonathan Edwards]

I am curious why.

Firstly because I am sceptical that such people actually exist and, if they do, I would like to get a feel for how many there are and who they are.

Secondly, if we are trying to understand ME/CFS any information about illnesses that might be similar but different could provide useful clues - as comparators.

I don't follow the bit about people being used as bludgeons. These hypothetical people have been used as justification by several BPS theorists for ever. If they are real then they should be respected.

 

[Alvin]

Firstly because I am sceptical that such people actually exist and, if they do, I would like to get a feel for how many there are and who they are.

Fair enough, i like numbers to work with so i can relate to this. That said if they were included because of bad inclusion criteria it tells us their selection criteria is flawed (which we already know)

Secondly, if we are trying to understand ME/CFS any information about illnesses that might be similar but different could provide useful clues - as comparators.

Thats also a good point, i do wish there was some worldwide standardization in tests done to rule out other conditions before an ME/CFS diagnosis. I mean we have people with MCS, genetic mitochondrial disease and many others who have gotten the ME/CFS label. I'm not sure the Canadian Consensus Criteria (for example) is frankly enough. It seems we have a patchwork of happenings in the ME/CFS world, this forum, OMF, Fluge/Mella, a few patient organizations, Jen Brea. Perhaps we need an umbrella group to coordinate between them all and map out a unified strategy forward
Though i can't get this comic out of my head

I don't follow the bit about people being used as bludgeons. These hypothetical people have been used as justification by several BPS theorists for ever. If they are real then they should be respected.

I think they would try to use some real faces who will parrot their philosophies to appear at conferences, sound bites and as examples in the news and so on. Having real people deliver fake anecdotal evidence is much more persuasive to public opinion then the facts (unfortunately).
In the US healthcare "debates" people who had been "harmed" by better healthcare availability would tell their stories on national TV and used as examples of why providing affordable healthcare to the public was a terrible idea. All that were fact checked turned out to be fraudulent. Public opinion was swayed by the lies.

 

[Sean]

The reason the BPS crowd don't use real examples of genuinely recovered patients is the same reason they don't report genuinely positive objective outcome results.

They don't exist.

 

[MErmaid]

I don't want to edit much messages people have liked so thought I would write this here as I want to highlight that I don't expect everyone to be able to donate or fundraise. Some people can be in difficult financial circumstances, I know and accept that.

I have just found it interesting to note that when people's circumstances improve at least healthwise, which would often mean their financial circumstances improved and would mean they might have more energy for fund-raising, they actually seem to contribute less on average. I have heard people say before you shouldn't look for money from the more severely affected. Unfortunately it seems to me you can't rely on people with ME to donate or fund-raise when their health improves. Indeed people's health may not objectively improve: people can just adapt to the illness and then care less about the cause. It can probably be healthy not to be too focused on finding the cure but I still get frustrated that a lot of people who have got ill seem to stop caring, the numbers interested at any one time are relatively small.

My conclusion is that too many PwME are sick and fearful, and are thus not good candidates to take action. Some are fearful that someone else might find out they have a ME diagnosis; so I doubt the fearful of ME Dx peeps will show up at a visible protest. And the ones that don’t care how others judge them, and want to help, are too sick to leave their homes.

And regarding donations, possibly you are younger than me, and can see a way out via financially supporting scientific academia? I support what you are doing 100%, I chose to invest my money in other ways, in which I may gain a more fruitful return in my lifetime. I will continue to donate my blood/samples to academia and clinical studies that do not engage in age discrimination, but sadly most do and I am barred.

I agree that we ALL need to be doing something we are passionate about. Posting on message boards is simply not enough.

I used to think there might possibly a single cure, but after 4 years, now I don’t think there is. I feel there are different events that led us to get ME, different DNA mutations, and even more reasons we can’t recover. I feel we will need customized treatments, tests to determine which treatments to take, and knowledgable providers trained to help us. IMO, this is going to take some time, especially getting a list of affordable treatments. Treatments are useless, unless they are both affordable and obtainable. Also, treatments may not guarantee a cure, but more likely they will allow us to lead better and more productive lives.

There is A LOT of work that needs to be done, and too few PwME that want to participate. Too many armed chair warriors in hiding, and not enough visible players.

 

[MErmaid]

I know what you mean @Dolphin . I know someone who asks me questions about what's going on with regard to research and advocacy etc. She's fairly high functioning and while she is still most definitely ill, she does not actually seem to realize how comparatively well she is.

She always says she wants to do more and get involved etc. Bemoans how we are treated. She doesn't work but has plenty of hobbies ...but still doesn't take the time to get involved. Most of the hobbies cost a bit so she probably could afford the odd small donation here and there too. She's comfortable financially.

She doesn't donate but is a member of a charity as she wants to contribute financially. Sadly, the charity she pays membership fees to is....AfME!
I have tried explaining the politics and she always says "Oh yes, I must look into that and keep up with what's going on.". Never happens though.

Waiting for someone else to do ALL the hard work for her.

Yes, exactly. I have PwME friends (not on the boards) that are waiting for others to do all the “heavy lifting”. They simply can’t be bothered with lending a hand. Instead they will complain endlessly about how ME has impacted their lives, and how horrible ME is. But that’s as far as it goes; they are stuck in an endless loop. After awhile, I lost empathy for them because I see their actions more of as a “self-fulfilling prophecy”

 

[Diwi9]

Yes, exactly. I have PwME friends (not on the boards) that are waiting for others to do all the “heavy lifting”. They simply can’t be bothered with lending a hand. Instead they will complain endlessly about how ME has impacted their lives, and how horrible ME is. But that’s as far as it goes; they are stuck in an endless loop. After awhile, I lost empathy for them because I see their actions more of as a “self-fulfilling prophecy”

Your posts of late are intriguing me. Whether you intend to or not, you are challenging people. We all respond differently to hardship. You are clearly a very resilient person. I have been ill nearly 9 years, but was only diagnosed at 7 1/2 after a relapse to a much lower state of function. I was diagnosed shortly after earning my second graduate degree in clinical psychology (oh, the irony). I have been slow to share information about my disease to my contacts outside of close family and friends, until recently. I have, however, donated and continue to donate. I have participated in political lobbying (to no avail and no thanks to US Congressional Rep. Ben Ray Lujan's office...a "warrior" for healthcare policy).

At first, it was difficult for me to just understand what was happening to my body and how my life would continue...but I've reached a sort of baseline in the past few months. The real turning point for me was seeing Anne Ortegren's Farewell Poem. I cannot fathom to see another person so worthy of life have to make such a decision and not be a voice.

I am learning to care less what others think about me or my status...this is my life. I find the more frank I am about it with people, they have to accept it. And, I am lucky to have friends and family who know me; they know of my athleticism, determination, hard work, and volunteerism. If someone doesn't want to like you or disparages you, they will find a reason...it doesn't have to be ME. I don't expect everyone to step up, nor is everyone able, but I am up for the challenge at this point.

Oh, and I still reserve the right to complain as much as I want about my disease and the BS we've endured as a community.

 

[MErmaid]

Your posts of late are intriguing me. Whether you intend to or not, you are challenging people. We all respond differently to hardship. You are clearly a very resilient person. I have been ill nearly 9 years, but was only diagnosed at 7 1/2 after a relapse to a much lower state of function. I was diagnosed shortly after earning my second graduate degree in clinical psychology (oh, the irony). I have been slow to share information about my disease to my contacts outside of close family and friends, until recently. I have, however, donated and continue to donate. I have participated in political lobbying (to no avail and no thanks to US Congressional Rep. Ben Ray Lujan's office...a "warrior" for healthcare policy).

At first, it was difficult for me to just understand what was happening to my body and how my life would continue...but I've reached a sort of baseline in the past few months. The real turning point for me was seeing Anne Ortegren's Farewell Poem. I cannot fathom to see another person so worthy of life have to make such a decision and not be a voice.

I am learning to care less what others think about me or my status...this is my life. I find the more frank I am about it with people, they have to accept it. And, I am lucky to have friends and family who know me; they know of my athleticism, determination, hard work, and volunteerism. If someone doesn't want to like you or disparages you, they will find a reason...it doesn't have to be ME. I don't expect everyone to step up, nor is everyone able, but I am up for the challenge at this point.

Oh, and I still reserve the right to complain as much as I want about my disease and the BS we've endured as a community.

You are amazing; I savored every one of your words. Thank you!!!

 

[sea]

https://www.omf.ngo/2016/08/01/prognosis-of-mecfs/

This is exactly the goal of PACE and LP, very well put

This was my thought too. The PACE trial authors would be proud of those who say they're recovered. That is after all their definition of recovery.

I have been wondering about all those people who are so loyal to the physicians and psychiatrists who have made them better with CBT and GET. OK one can say that once people are better they get on with their lives and so do not contribute to the online debate and so the online community consists of the malcontents who have not got better and does not reflect the opinion of those who have recovered with therapist-delivered treatments. But surely at least some of these recovered people would want to tell their story and also to fight for the cause of better care? Surely some of them must have struggled for ages before finding 'a good therapist' and would want to campaign for wider availability of ME/CFS services?

I think you will find that patients who have had CBT and GET are also indoctrinated with the narrative that support groups are harmful and that speaking up would be unsafe for them. Not that I believe anyone with ME/CFS have been made better with these treatments, but one of the excuses that was given for not releasing the data for PACE was that participants would be identified and harrassed by other patients.

 

[Trish]

As I said in a previous post, how folks decide to live with ME is strictly their business. I didn’t realize you supported psychological theories that apply to PwME? If so, then this is news to me.

Given the circumstances, we all need to make our own decisions about risk vs reward. There is no proof that if we all choose to simply sit around, that this will magically bring ME drugs into our medicine cabinets. Many people are required to take risks and make large financial investments, to get us from point A to point B. So I am a risk taker, doing what I can to get the ball rolling. Meanwhile you can wait for the perfect studies, the proof, or whatever you require to be convinced.

In my life from a very early age, I refused to accept things I did not like as “normal”, if I thought they could be changed or improved. I also spent my entire career working alongside brilliant people who were fearless and felt the same way. I was raised not to accept the status quo., but to challenge it, and improve/change it. I would not fit into Dr Bells theory. I am not a helpless victim waiting to be rescued; that is not my “normal”.

Since this post was addressed to me, I think I had better respond. I clearly could not have expressed myself clearly in my post. I do not, and have never supported psychological theories about ME/CFS.

I also do not accept many things, but I simply don't have the strength at present to do more than the little I do to 'be a fighter'. Getting through each day myself as best I can while also being carer for my sick daughter is my fight. Donating to good research as and when I can and doing what I can on forums, letters etc are tiny steps forward too.

I find your judgement of others whose circumstances you don't know as 'helpless victims waiting to be rescued' feels judgemental and even unkind.

Edit to add. I'm sure you don't mean it that way, but please do be careful. Most of us are unable to be 'fighters' in the way you define it. Please don't judge us.

A further edit. I've been puzzling over how you could have come to the conclusion that I support' psychological theories about ME. Was it my use of the phrase 'false beliefs' when mentioning the problems in the UK? I thought everyone would understand I meant the psychiatrists and some doctors have false beliefs about the nature of ME, not that patients have false beliefs.

 

[Valentijn]

Firstly because I am sceptical that such people actually exist and, if they do, I would like to get a feel for how many there are and who they are.

There are some, but very rarely had anything resembling ME/CFS. Generally they seem to have had chronic fatigue, often with mood disorders. Some sound like they had orthostatic intolerance or similar, which can respond well to exercise. Very very few describe ME symptoms.

Regarding personality, they seem to be especially deferent to authority and people-pleasers, which can get uncomfortable for them when what pleases the therapist is offensive to other patients. At best they have a very superficial understanding of science or ME/CFS research, and generally withdraw from conversation once it gets into those areas.

I don't follow the bit about people being used as bludgeons. These hypothetical people have been used as justification by several BPS theorists for ever. If they are real then they should be respected.

Esther Crawley trotted out a (former?) patient for an interview about the SMILE trial. She also put up a slide of a girl in bed and gave her a name during her TEDxBristol talk, then explained that it wasn't a real photo or name because patients might harass the child if we knew who she was.

The CFS patients who appear in the Daily Mail talking about their pole-dancing cures and world-record paddle-boarding are essentially a weapon used against patients as well, even if it's not clear if a BPS clinician facilitated their involvement with the media. They are always used to explicitly or implicitly indicate that a better attitude and some exercise can cure ME/CFS.

 

[Valentijn]

Quite a lot of people can spend significant sums on speculative therapies. I'd be happy if a lot of people gave 1% of what they spent on such therapies to research. This would adjust for people's disposable incomes.

What people choose to donate is entirely up to them, and people with chronic illnesses have enough shit in their lives without adding another guilt-trip to it - which is why forum rules include a statement that "it is not permitted to use guilt or other coercive methods as a basis for fundraising." Many people may also be donating to other causes or via other avenues and simply never talk about it.

If one method isn't working to raise money, it might be worthwhile to try others. People seem to get most enthusiastic when there's a specific project with a detailed explanation of what it involves. They want to see a way that their contribution will make a difference, something that they can feel positive about.

 

[Cheshire]

There are "patients' stories" on Per Fink's functional clinic website. The site doesn't seem to work properly for me, but here's the link in case it's temporary or due to my computer: http://funktionellelidelser.dk/en/patients&families/patient-stories/

At least one of these stories had struck me when I read it some time ago. The story started by the woman enthousiasticly saying she was recovered, and the more you read about her the more you realised she still had very restrictive limitations. But she considered her new recovered self was essentially accepting these limitations as "normal" while before she was a successfull business woman wanting too much of life.

Apart from the miraculous recoveries claimed by snake oil sellers like LP practitioners, the only cases of people claiming to have been cured by the CBT/GET combo were of the same kind and all talked about “accepting your new limits”. If the BPS crew had better to offer, I'm sure they would.