The benefits of early diagnosis

[eve789]

I've seen a lot of language like this in the articles I've been reading lately on ME:

"Although there was no cure, patients receiving an early diagnosis and offered a supportive management regime with case-specific examinations were less likely to deteriorate, she said."

I've been experiencing symptoms for a year and a half, have just diagnosed myself, and think I'm on the verge of getting my doctors to agree with me. Woohoo!

However, given that most doctors don't know how to treat ME, don't even entirely believe in it, even if they do diagnose you, and there is no none cure, why is early diagnosis important? Are there studies that actually show it, or is it just folk wisdom? Is it because patients who are getting diagnosed early are actually getting good treatment, or are they just lest likely to push themselves beyond their limits, and thus exacerbate their already horrible condition?

I'm "lucky" in that I'm only 20% bedbound, and so far can spend 80% of my time living a relatively normal life. However, my relapses seem to be getting worse as time goes on, as are my supposedly psychosomatic neurological symptoms (I used to not have neuro symptoms, only flu+fatigue).

How can I put the breaks on this?

Really wish all of this stuff was in a Wiki. I'm laying in bed, waiting to go to more doctors appointments and do more blood tests that are likely to come back normal, but I wish there were things I could do to start treating myself now. It would be great to have a primer with a list of potentially helpful interventions, with citations to research studies that might provide empirical or theoretical support for the intervention, plus a poll for each intervention, say, of users on this site rating their self-reported symptom improvement, plus a space for more qualitative comments/suggestions.

Just for example: magnesium supplementation,links to studies on lactic acid in CSF of patients with CFS, poll of users who found mild, moderate, or significant symptom reduction, of which symptoms, at what doses, comments on length of time it took for magnesium to become therapeutic, etc.

If anyone thinks this would be useful, I am pretty sure I can ask some of my coder friends to do a hackathon and produce a tool in a couple of hours. If someone is already working on this, let me know how I can help!

 

[pine108kell]

The CDC used to have a similar statement regarding the critical importance of getting an early diagnosis, at the same time mentioning there is really no treatment for CFS (I don't know if the CDC still has this statement). Considering the near total ignorance of most doctors and CFS, I doubt the statement is really based on science. Just something for CDC to throw out there and pretend they are helpful.

Sadly, although I doubt it is based on any meaningful study, the statement is probably true simply for the fact that it is probably better for your health to have a doctor actually acknowledge you are sick rather than have them continuously dismiss you as having psychological problems when you know the latter is false--the latter is not good for anyone's health.

 

[Sushi]

And, while there are no cures yet, there are treatments that help and seem to also prevent you getting worse. Many people here have posted about treatments that have helped them.

It seems that the benefit of earlier treatment is that you have less of the progressive damage to deal with.

Best wishes,
Sushi

 

[eve789]

And, while there are no cures yet, there are treatments that help and seem to also prevent you getting worse. Many people here have posted about treatments that have helped them.

It's hard to know where to start, though.

 

[Sushi]

It's hard to know where to start, though.

I think an early step is finding a doctor who knows a lot about ME/CFS and has had some success in treating patients similar to you.

This forum is a big help with that.

Best,
Sushi

 

[eve789]

Hi Sushi. I think what I mean is that this format is great for discussion, but makes it very hard to find information.

I've heard there's a plan for a wiki, but I'm wondering if there are any other centralized resources for information on theories of etiologies of the disease, scientific research, potential treatments, etc. A one-stop shop so I don't need to expend hours of limited energy sifting through old discussion threads.

Definitely hear you on the doctor, though. Hope to be able to get an appointment soon.

 

[SOC]

Antivirals, in particular, seem to have the best effect if taken within the first year or two. I strongly agree with Sushi's point that finding an ME/CFS specialist very quickly is important.

For some good, general info about treatments and such, click on the Home tab at the top of the page and then look at the tab choices there.

 

[Sparrow]

A number of people have been helped greatly by various drugs and supplements, and by having a specialist who actually understands ME and is knowledgeable.

That said, I firmly believe that not pushing beyond our comfortable limits is a HUGE factor in recovery. Probably much bigger than any of us like to realize sometimes, since it's always so tempting to do just that little bit more. I know that the times I've actually rested (and truly rested) without doing enough to trigger negative effects, my rate of recovery has skyrocketed (truly). Unfortunately, times like now where I mostly try to stay within my limits but sometimes push a bit too far, that progress stops. Anyway, pacing is something you can definitely do without medical help.

For me, I know that I would have been MUCH less ill if I had been accurately diagnosed earlier. My problem was that I didn't know any better when I was in the condition you are now, so kept trying to push myself harder and harder. ...And then was given the terrible advice to try exercising more, and drove myself right into bed full time. I think the lower you get, the harder it is to get back out of this pit.

If you're 80% able to do things, that's great. The trick is to identify what's causing those relapses you mention and STOP DOING IT. Attempt to prevent them at all costs. Otherwise the slope down can be much faster than you'd think. I know I never imagined I could lose so much functioning so fast. But I kept trying to go back to my normal level of functioning without giving myself time to fully heal, and so had those backslides again and again and again and then eventually just didn't come back up. It took a very long time to learn how to stop doing even things that seemed "essential" if it meant stretching my limits or risking repercussions to do them.

Good luck! I truly think having the chance to stop the cycle early can save you a great deal of pain.

 

[heapsreal]

If i could go back in time i would have jumped on antivirals very early in the game which i think could have prevented alot of different things from cfs/me, thats my opinion. but finding the right doc and getting the right testing is another battle too.

 

[ukxmrv]

I had an early dx of ME from experienced doctors (before CFS was invented) but sadly at that time there were no treatments for the disease. I'm not aware of any studies that find early dx to be indicative of recovery but like yourself I keep hearing this claim. The things that have helped me as anti-virals, immune modulators and most importantly to avoid exercise and exertion.

Only the last part was available to me as a patient 25 plus years ago. I only wish that I had done more exercise avoidance.

Maybe what is meant by the early dx / management plan that if a patient gets the right diagnosis and treatment and advice then they are less likely to become bedbound and chronic over time.

That is why I have a strong reaction when someone says that they want to convince their doctors that they have ME or CFS. It should be the other way around. If someone has a not clear cut case then who is going to run out all the tests to exclude things or do the basic work?

In the UK the "early diagnosis" quote has been hi-jacked by one of the harmful "patient" charities to try and increase the number of the useless chronic fatigue clinics that we have here. Patients then get a dx of CFS but without in some cases a proper medical examination and then are offered CBT and pacing/exercise as treatments. It's a disaster and one of the reasons I think we have so many chronic cases and deaths.

I suspect that an accurate diagnosis is more important than a quick one. I also suspect that the proper treatment is needed and not a management program that some doctor just wants to sell us.

The hard part is of course finding that right management program for each patient. People have always offered to do the number crunching you suggested but with such a wide difference between each individual CF, CFS, FM, ME patient I've always been sceptical of just how useful it would be. I'm thinking of things like length of illness, tests , actual abnormalities and how "good" any individual diagnosis of many patients on the internet are.

When we have a poll it always shows the same sort of thing - some better, some the same and some worse. It's the numbers of each and the % in each group that changes.There are few citations or studies in medical journals to back up treatments. We don't have the research and that's out problem. It could have been done over the past 20 years but that's another politcial story.

Have a look at this website trying to evalulate treatments for CFS. 40% don't have my major problem of sore throats/glands. Nearly 50% don't have a diagnosis, None of my top treaments are there on the commonly prescribed apart from "rest". How useful is this to me or any individual ME or CFS patient?

http://www.patientslikeme.com/conditions/27-chronic-fatigue-syndrome

If I were to start again I get as quckly as I could to a doctor offering leading edge experiemental treatments with immune modulators, antii-virals as that is where I've made progress. I'd also choose someone who could run the tests to exclude things and make a decent stab at a diagnosis.

 

[eve789]

Yeah...I actually started a petition to Patients Like Me on another thread (http://forums.phoenixrising.me/index.php?threads/patients-like-me.17388/), but didn't get much love. It would be a very minor victory if they could make a separate ME category with the right treatments, symptoms, etc. listed. They list NO neuro symptoms, for example.

I really appreciate hearing all of your experiences. It's incredibly generous to share so much. I am trying to heed the advice to take care and pace myself. It's in some ways easy now, because I'm in the middle of a flareup and am homebound and mainly bed/couch-bound, but even then, sometimes it's hard to not use the computer to much. My brain is still pretty active and I just get incredibly bored not knowing what to do, given that there's very little I can do. Can't read anything really hard or write anything really hard. The key, I realize, is that whenever I get past this, whether it takes a few days or a few weeks, is to remember the importance, when I'm well, of doing 50% of what I think I can manage. It's hard sometimes, though. When my body decides it's payback time, there's no gradual warning or escalation. I can go from 100% to 5% pretty fast, and never know I'm teetering on the edge until I've already crashed. But maybe after awhile, you get good at recognizing the early signs?

On antivirals/treatment, I'm seeing a bunch of doctors locally over the next few weeks, but am most excited about seeing Nancy Klimas (well, Dr. Rey) in about 2 months. I hope hope hope she can help. I hope that a year and a half in (which is where I am) is still early enough to make a difference.

 

[Sushi]

Some of us have learned to recognize early warning signs that tell us "enough already!" Look for subtle physical feelings that you might ordinarily ignore. They seem to vary from patient to patient. I get a funny feeling in my chest that is hard to describe. If I stop when I first feel it, I don't get payback.

Best wishes,
Sushi

 

[Little Bluestem]

On another thread, http://forums.phoenixrising.me/inde...n-of-me-cfs-patients.16143/page-3#post-264503, member Kina told us about a book written by a nurse for RNs about dealing with ME/CFS. It is called ‘What Nurses Know … Chronic Fatique Syndrome’ and was written by Lorraine Steefal. It might help you ‘nurse’ yourself.

Be forewarned that the rest of that thread is not pleasant. You may not want to read it.

 

[taniaaust1]

"Although there was no cure, patients receiving an early diagnosis and offered a supportive management regime with case-specific examinations were less likely to deteriorate, she said."​

As far as Im aware is that never has come from any studies but something which the psych theory ones have probably helped to push .. re abnormal sickness beliefs... they probably think it isnt best that we are left in those long.

It is thou true that an early diagnosis and the RIGHT support may of helped many of us.

I know in my case had I had a doctor diagnose me earlier... I wouldnt attempted to push myself throu collage the way I did. I are sure I then would of ended up no where near as bad as I are now. I tried to push myself throu college and cause I did that, I ended up long term bedbound. If I'd been diagnosed early and had a good specialist telling me I not to push and keep crashing.. I would not be where I are today.

 

[Liz-Melbourne]

I think an early diagnosis has helped me. Ernormously, actually. I am 12 months in and have regained some ground.

My father pushed on and on way past normal human endurance levels and was so sick when he was eventually diagnosed that he didn't stop shaking for 14 months.

I was a teen at that time so remember it well enough that I was too scared to continue living in a way that might encourage that level of sickness. My father is SO good at pacing that he has taught me a LOT.

It also makes sense to me that there might be less damage to heal from if the illness is relatively 'young'.

Of course, it's much, much more complicated than that, I am sure. But that is my 2c.

 

[Enid]

isn't it just ordinary common sense too that early diagnosis would be the most beneficial in any disease. But then of course in the UK it appears patients have no common sense. It's the we know more you approach here !. If only they did.