ME/CFS and permanency

[Tia]

Dokagirl said

When I was first diagnosed, after 17 years, I became involved with the local ME community. I asked them why they kept downplaying how long it could last and how serious it could be and they said it was because it could frighten new patients.

A few years later the MEAssociation did and issue of their magazine about severe ME and they were inundated with complaints. An answer to a post I made on an old forum sums it up. A woman said that the only way she could cope with her daughter's ill health was to believe it would go away and that it would not get worse. She accused me of taking away that hope.

I felt at the time that this downplaying of severity and lack of recovery was trivialising ME and was in great contrast to the MS community who then and now have to try to get people realise it is not as severe a disease as the public conception of it.

I think the problem is that it shouldn't be down to other patients to break the news to new sufferers that the illness can be long-term. This kind of information should be delivered by qualified people in a sensitive way (as I imagine happens with MS). Support groups can then come in and provide information on how to live well with the illness and how to access support.

I do think it's important that new patients are made aware that pvf can often resolve in the first year or two if they rest and pace. But equally, patients need to know the truth - that it can be long term. They need to know the full picture so they can make informed decisions about their lives.

Doctors not wanting to tell me I had CFS just in case it made me worse had a real impact on my illness progression. If I'd know I had it, I could have cut down my hours at work and learnt about pacing. I think if I'd done that, I might still be working now (although probably still part-time). Instead, I struggled on going to work with horrific symptoms for years with no idea what was wrong with me until I was so ill I had to be signed off work and never got well enough to go back. They thought they were somehow protecting me from myself but in fact they were withholding information that would have empowered me to help myself.

I think Sharpe wants to talk about the actions of charities and support groups as distraction from the conversation we should be having which is about the actions of doctors.

 

[Wonko]

I wasn't told by my GP.

The first I knew about it was when I got an appeals pack back from the DWP (welfare benefits agency) which contained a form my GP had submitted to them, which said I had ME. When I took this form to her and asked her about this she flat out lied and told me that she had told me.

 

[Mij]

I think the honest/realistic view in the ME community and support groups in my city was because we had 2 well respected knowledgeable ME doctors. I still didn't listen when I was advised not to exercise and pace. I wanted to surround myself with positivity.

 

[DokaGirl]

Dokagirl said

When I was first diagnosed, after 17 years, I became involved with the local ME community. I asked them why they kept downplaying how long it could last and how serious it could be and they said it was because it could frighten new patients.

A few years later the MEAssociation did and issue of their magazine about severe ME and they were inundated with complaints. An answer to a post I made on an old forum sums it up. A woman said that the only way she could cope with her daughter's ill health was to believe it would go away and that it would not get worse. She accused me of taking away that hope.

I felt at the time that this downplaying of severity and lack of recovery was trivialising ME and was in great contrast to the MS community who then and now have to try to get people realise it is not as severe a disease as the public conception of it.

Thanks @Mithriel for your comments. How frustrating for you, and all of us who see support groups, who should know better, downplaying the terrible symptoms of this disease. Saying ME is short lived, as officials did early on in Canada, not only creates hope, but apathy. The message then, as now with some powerful groups is that no one need investigate further. This is easily fixed. Don't bother trying to drum up biomedical research funds, everyone recovers.

Groups and others in the know don't want to create panic and despair, but on the other hand, we need the truth. Scientific evidence spurs some on to search for more.

Early on I certainly hoped the authorities were right. But was very puzzled and concerned that my dreadful symptoms would simply vanish in a few months. The contrast was stark.

 

[DokaGirl]

The support group and ME community I joined in the early 90s was quite the opposite. They told me that I would have a life long chronic illness. I didn't have cognitive issues back, but they told me that eventually I would. I stopped going because it wasn't a good fit for me. I had all the positively of becoming well again.

@Mij my experience exactly. I was told I'd never get better. I did feel accepted at meetings, and didn't have to pretend I was well or fine, but the it was a downer to go the meetings. I was so hopeful I'd recover. Medical advice said so. Medical advice also downplayed my dreadful symptoms.

ETA: Talk about cognitive dissonance!
ETA#2: I was really desperate to recover. I tried very hard to get better. This, contrary to the BPSers who think pwME are just along for the free ride.

 

[Mithriel]

I think the problem is that it shouldn't be down to other patients to break the news to new sufferers that the illness can be long-term. This kind of information should be delivered by qualified people in a sensitive way (as I imagine happens with MS). Support groups can then come in and provide information on how to live well with the illness and how to access support.

I do think it's important that new patients are made aware that pvf can often resolve in the first year or two if they rest and pace. But equally, patients need to know the truth - that it can be long term. They need to know the full picture so they can make informed decisions about their lives.

From hearing about the experiences of many people with ME I feel it is vital that new patients know it is a disease that is usually life long because people have thought they were well and then crashed to a lower level than before. The important thing is to avoid severe and especially very severe ME.

But that is not the same as having no hope of a normal life. Many disease are lifelong. Hyperthyroid is treated by destroying the thyroid gland so you then need thyroxine for the rest of your life, gout needs a pill every day. Diabetes never goes away but it can be controlled and that is what is important for someone newly diagnosed with ME.

Our main hope is for a treatment which controls ME so we can live a normal life. A cure would be good but not so likely. Going slowly when you feel a bit better, so, so difficult, is more likely to give a good result than diving into life again.

I was at a talk in the 80s given by someone from the ME Association. She said she felt well again but then she did not play squash or anything like that.

Personally, I decided to give up hope in the early 80s. I realised I had put my life on hold because I was going to do it all when I was well but instead I was getting worse. After that, I put more effort into balancing what I managed and what I was able to do. It worked for me, but not a way for everyone.

 

[Mij]

@Mij my experience exactly. I was told I'd never get better. I did feel accepted at meetings, and didn't have to pretend I was well or fine, but the it was a downer to go the meetings. I was so hopeful I'd recover. Medical advice said so. Medical advice also downplayed my dreadful symptoms.

I forgot to mention that I was told by the ME doc that I would get better within a few years because my particular case was 'atypical', so when I attended support groups I thought that I might have something different or just PVFS. The doctor told me to 'do nothing' and not exercise even when I started feeling better, but didn't explain why I shouldn't exercise. The term PEM was unknown back then, and with no internet to research, I thought he lost his mind if he thought I wasn't going to exercise again.

 

[Wonko]

I was told to do 10,000 steps a day and offered free gym membership (at 2 different times).

Compared with not very well controlled by their meds type 2 diabetes, my ME was seen as unimportant.

So I tried, and after 3-4 weeks ended up with it taking all day (6-7 hours) to walk 4-5,000 steps and unable to do much else.

I kept trying to follow the 'medical' advice until I could no longer stand unaided or walk, not even to the kitchen.

Provided I can understand the instructions I have a tendency to try and do as I am told, even if it seems insane to me - I may grumble and curse, but I keep trying to follow instructions.

My GP was not interested in this and simply restated that I should be walking 10,000 steps a day, and if I didn't want to that was my decision.

 

[DigitalDrifter]

I wish that I had been diagnosed properly and told to not go over my injury threshold back when I got ME in 2007. I've ended up with permanent damage to my body.

It's my main objection to psychogenic attribution, that the illness is then not seen as consequential or permanent. For example Brian Walitt (a quack who states without adequate evidence that ME and Fibromyalgia are psychosomatic) says harm can't come to patients if they are left untreated. I was left misdiagnosed and neglected for years and as a result I've been bed bound since late 2013.

Walitt has been Lead Associate Investigator for ME/CFS at the NIH.