Realistically there is no cure?

[Research 1st]

There is no cure for ME, but within years there may be a biomarker and a treatment for a subset.

Realistically, this is for a subset not sick for too long, a 'cure' (for them) could be on the cards depending how you define cure of course....

Time is the problem here. Time spent ill. TIme spent inflamed, damaging your CNS, Lungs, Heart, Kidneys, Liver, Bones and Vasculature (Endothelial disease is a big killer). For example, Bartonella likes to infect endothelium, so we'll have to see how these elusive ME pathogens go on that front if you've lived with untreated Bartonella since 1990 and are still alive.

Basically speaking, if you have autoimmune disease for 5 years (caused by a pathogen infiltrating tissue that can be research with medicine), then yes, perhaps you'll get back most of what you had before sickness with a 'cure' (lets call it the 1st ever evidence based treatment).

But if you're sick 30, 50 years. Forget it. This sadly, is our reality. Or should I say, preventing us from having a life due to a conspiracy to silence the patients in the eyes of science, the media, and the public by basing their potentially fatal disease, on 'fatigue', using no objective measures. (Fukuda Criteria CFS to define 'ME' is a crime in itself), because it well known patients die from ME or CFS for decades, but not a single influential 'researcher' has the balls to stand up and point this out - except Dr Montoya. He is ignored, and the SEID and P2P remain as they are.

No scientist can reverse long term MS, Lupus, Diabetic damage and the same will go for 'ME'.

The deciding factor, in my opinion, will be if the pathogen in ME infects brain cells (nerve cells). It could well do, in which case, I'll be writing this with more than a spellchecker in another few years as will others who meet criteria for pre dementia, but aren't allowed a diagnosis due to political meddling.

If and when the 'cure' (misnomer) is revealed, the surviving PWME and PWCFS will see that politics is to blame, not doctors, ohh and some very very silly people who always new.

All it took was money, money pushed away by a ruse. The ruse of 'Chronic Fatigue' trying to hide non HIV-AIDS in children and adults who were never bitten by ticks (who have Lyme) and who never had sex (but have given 'CFS' to their family members = prions and pathogens from blood transfusion and horizontal infection).

The 'CFS' will he shown to be genetically transferable from mother to baby, hence cluster outbreaks but no pandemic, and hence the British ban on mothers umbilical cord blood if she has 'CFS'.

They always knew. That is the tragedy, and the genocidal act of limiting people's full potential, due to embarrassment of how this was all caused. Such a tragic waste:

So many good people - silenced. (Patients, Carers, Researchers on the side of 'ME' all along advocating for anti inflammatories, antivirals, antibacterials etc).

Vs

So many bad people in charge of 'CFS', given center stage to continue as if nothing ever happened back in the 1990's and no emergency exists as it's our fault we are ill (CBT, GE, Pacing, Antidepressants).

A cure for some then, will be a bitter pill to swallow for those excluded from the celebrations (people die). Too little, too late, if you're elderly with ME CFS and never had a life, and now the medications simply cannot treat the damage done.

We've seen it all before in science, and in history. Humans never learn. Greed and Power always determine who wins and who loses. The loss of religion in society and science = less guilt for committing evil acts = more ability to harm.

In a religion less society, mixed with capitalism and self adornment of the trappings of wealth (or in science by 'respect' by your peers), patients can go hang. And that is what happened to all of us, cure, or otherwise.

Maybe the people who can get better, can help sue the psychiatrists? Hopefully that will be one positive aspect of this dreadful situation.

 

[SOC]

From my personal experience and living with milder ME it seems like all the symptoms get better and worse together? Is this something specific to only particular people or milder ME as a whole?

On first thought, I would agree, but on further thought I have to say that some symptoms got much better with treatment while others remain at problematic levels. When I PEM, though, I get a lot of the usual symptoms back even if I don't have them during everyday life with careful pacing.

 

[zzz]

From the first post in this thread:

I think currently we need to realise that there isn't any treatments that are going to bring us back to pre cfs/me state and we need to adjust our expectations.

And more recently:

But if you're sick 30, 50 years. Forget it. This sadly, is our reality.

No scientist can reverse long term MS, Lupus, Diabetic damage and the same will go for 'ME'.

I recognize that these are common beliefs, but as the saying goes, it ain't necessarily so. From Tuning the Brain by ME/CFS researcher and clinician Dr. Jay Goldstein:

Usually, in cases like this, I perform what I term a "resurrection". Mrs. Jones arrives by ambulance in a hospital bed where she has been confined for months or years (take your pick). That day will be, I'm sure, my only crack at her. I can usually get Mrs. Jones ambulatory, often with intravenous medications, by the end of the day, so that she can walk into my office on her next visit.

If you read Dr. Goldstein's books, you will see that his success rate with patients was independent of the time that they were ill. Briefly, he said that he was able to make all but two or three percent of his patients asymptomatic, or nearly so. They were then able to go on to lead normal or nearly normal lives.

In his time, Dr. Goldstein was known as "the end of the line", so he saw the sickest patients. He never once uses the word "cure" to describe his treatments or results, but refers to them simply in terms of symptomatic relief.

I realize that many here will not believe this for various reasons, and that's fine; I have no interest in debating this issue. I am simply posting this for those who are unaware of the benefits of Dr. Goldstein's work, and for the benefits that it still holds (many of which I have experienced myself), and who want to learn more. For those who are interested, further information can be found in many of my posts, most specifically in the thread Dr Jay Goldstein's Instant Remission ME/CFS Treatments.

 

[Kati]

To be realistic, no research team has even been given the chance to do proper and statistically significan research due to the lack of funding.

We have brilliant teams. There are brilliant scientists in this world not yet exposed to the dilemmas and challenges that our disease offer. Give them the money, the opportunity and we'll revisit in a couple years.

 

[alex3619]

Some of have had very brief full reversal, sometimes lasting only hours. There is bound to be long term damage, but I think many or most of us will bounce back if there is a cure. The question is more about when that will be. What percentage bounce back at what stage of the illness is unknown. I would agree its likely that very long term patients will have a decreased chance of full recovery, but nothing is written in stone.

 

[Sasha]

I was bedbound for ten years and then went into a ten-year remission, during which I was able to build up to working full-time, occasionally going to the gym, having a full social life... all 100% except for frequent periods of what seemed like acute viral illness that put me back in bed for a few days. Then I relapsed, but during that remission, I was mostly fully functional.

I wouldn't write us off, necessarily...

 

[Gingergrrl]

I was bedbound for ten years and then went into a ten-year remission, during which I was able to build up to working full-time, occasionally going to the gym, having a full social life... all 100% except for frequent periods of what seemed like acute viral illness that put me back in bed for a few days. Then I relapsed, but during that remission, I was mostly fully functional.

I wouldn't write us off, necessarily...

@Sasha what do you attribute a ten year remission to after ten years of being bed bound?!!! Have you written about this in another thread that I could read or PM me? Am just curious since I know you have very limited options in the UK. Was it random in your opinion? Sorry I have not read this whole thread if you already explained?

 

[Sasha]

@Sasha what do you attribute a ten year remission to after ten years of being bed bound?!!! Have you written about this in another thread that I could read or PM me? Am just curious since I know you have very limited options in the UK. Was it random in your opinion? Sorry I have not read this whole thread if you already explained?

I did a number of things simultaneously that I've since replicated during this relapase and they didn't work this time. FWIW, I went on a raw food diet; started lying down flat until I felt rested (even though bedbound for years I'd resisted doing that during the day as it would have meant I was 'really ill' ), stopped 'boom and bust' (I'd occasionally have a trip out and really pay for it later), got my sleep schedule back in order (I'd ended up with complete sleep reversal). I saw some slight improvement quickly but it took a couple of years before I was well enough to live independently again.

I wonder now if the raw-food diet disrupted my microbiome and gave some better bugs a chance but I have no clue. I didn't know about OI or I'd have been lying down more in the first place - maybe that got some more blood to my brain and gave some stuff a chance to heal. And better pacing, of course... maybe it was the pacing. It's hard to do when you're bedbound in the first place. It's such a boring life that it requires such a lot of discipline to do even less than you're doing.

I don't have any further insights to add, though, and this thread is about the possibility of recovery and not how I got out of my relapse so it's probably best if we leave it there.

I just wanted to make the point that big (though not perfect) remission is possible from a ten-year severe illness, at least.

 

[EtherSpin]

I think your right.

About 6 years on antivirals. I have made a few attempts to stop but within 2 to 4 weeks viral symptoms return. My last antiviral free period i ended up with shingles, so i will remain on them now until they find a cure.

at a guess, they would all be as expensive as Famvir ?
(and not many Aussie docs willing to use them)

 

[heapsreal]

at a guess, they would all be as expensive as Famvir ?
(and not many Aussie docs willing to use them)

Famvir cost me $100 a month. It adds up especially the cost of other meds and supps. Nice if avs were recognized by medicare and covered by PBS then i would be paying $30 a month . It keeps me functioning .

 

[MNC]

Does noone here believe that Dr Lerners claims to treating patients with CFS have been successful? His website makes some pretty strong claims to the causes and treatment of CFS and that former patients are living productive lives. Dr Lerner himself treated his CFS/ME illness with antivirals and he is still working fulltime at an age that most people wouldn't event contemplate working?

This work has been taken up by the Stanford researchers so it seems to be moving towards 'peer acceptance'.
http://med.stanford.edu/chronicfatiguesyndrome/infections/herpes/herpes-experts.html

I've been watching the videos in this site of Dr. Lerner and he sounds so convincing that it's hard to think he is not telling the truth.

Any testimonials or stories of patients of his in these forums? Nothing dedicated to him in Phoenix Forums?

Video 1 http://www.treatmentcenterforcfs.com/video/2011-prt1.html

Video 2 http://www.treatmentcenterforcfs.com/video/2011-prt2.html

 

[Sushi]

Any testimonials or stories of patients of his in these forums? Nothing dedicated to him in Phoenix Forums?

There is a great deal about Dr. Lerner here. Try a Google Site Search.

 

[SOC]

I've been watching the videos in this site of Dr. Lerner and he sounds so convincing that it's hard to think he is not telling the truth.

Any testimonials or stories of patients of his in these forums? Nothing dedicated to him in Phoenix Forums?

Dr Lerner's antiviral treatments made a big difference to my family, but it took years, so no one should think it's a quick and easy path. One family member went from a 7 or 8 out of 10 to cured (as far as can be determined) over the course of 6-8 years. One went from about 4/10 to about 9/10 -- functioning fairly normally but taking a lot of treatments to stay there, over about 2 years. The third when from 0 or 1/10 to about 4/10 over 2 or 3 years under his care.

I think Dr Lerner has a decent treatment plan for a subset of ME/CFS patients. A lot of people improve under his care, but others don't. He's not a miracle worker, and in my experience, did not claim to be.

 

[sscobalt93]

I know it sounds controversial but I have heard BHT(the man made preservative) has cured people of hepatitis. Which is a lipid coated virus, and from my understanding a lipid coated virus can cause MS. I am not saying it works, I do know there is a yahoo group of a guy who is helping people with lipid coated viruses(hep mainly) and people are getting well in record time! Even people with HIV are using BHT to help them with the virus. I am going to do more research as I have a high viral load for EBV. Which can cause MS. Low doses are used though not the high toxic doses. It's worth looking into.

Heres a link that could provide more info:
http://www.growyouthful.com/remedy/BHT-butylated-hydroxytoluene.php

 

[redaxe]

Dr Lerner's antiviral treatments made a big difference to my family, but it took years, so no one should think it's a quick and easy path. One family member went from a 7 or 8 out of 10 to cured (as far as can be determined) over the course of 6-8 years. One went from about 4/10 to about 9/10 -- functioning fairly normally but taking a lot of treatments to stay there, over about 2 years. The third when from 0 or 1/10 to about 4/10 over 2 or 3 years under his care.

I think Dr Lerner has a decent treatment plan for a subset of ME/CFS patients. A lot of people improve under his care, but others don't. He's not a miracle worker, and in my experience, did not claim to be.

May I ask how long each family member was sick for?

See this could be the other problem with treatments is the age of the patient and how long they have the illness. Take Alzheimers for instance. I remember learning that a lot of the experimental drugs were just not that effective because the illness was so advanced. I'm not sure how Alzheimers research has progressed since then but apparently the disease is active for years even decades before clinical signs of memory loss become apparent. They think that drug therapies are far more likely to be effective in an early case of the disease than an advanced case because the brain has suffered less damage.

That makes me wonder about the FDA rejection of Ampligen for instance. If it was used to patients that are really sick and have been sick for a long time could that skew the results to give the impression that it is not significantly effective? This might just mean that these patients need a higher dose for a longer period of time to see effects which the studies might not have allowed for.
Whereas on patients with CFS/ME for less than 3 years you might see a very different story. I don't know if the researchers & FDA have been taking this variable into account. No-one seems to really be taking the duration of the illness with much interest but in drug trials it could be a game-changer.

part of this problem is we don't have biomarkers to measure the progression of the illness and it has a relapsing/remitting nature. We can measure abnormalities sure and they have found that cytokine profiles change over the progression of the illness but we haven't yet translated that into appropriate treatment options.

 

[SOC]

May I ask how long each family member was sick for?

I'm inclined to agree with your thinking to some extent. The person now 'cured' was by far the least ill. I don't know how long he was ill, but he was able to work the whole time, so never moderately or severely ill. He was in his late 60's and early 70's during treatment.

The second was was ill for 5.5 years, but in remission for most of that time and only moderate-severe for about a year before treatment. If she had not had family members with ME and been diagnosed when still extremely mild and mostly in remission, we would have thought she only became ill when she progressed to moderate/severe. So by many standards she was only ill for a year. She was also under 20yo when she started treatment.

The third (me) was the most severely ill (bedbound) and continuously ill the longest, I think, at 5.5 years. I improved significantly under Dr Lerner's care, but did not improve past housebound. I gained additional improvement after moving on to another specialist after I plateaued under Dr Lerner's care. I continue to take antivirals on and off, even under the new specialist.

My suspicion is that in ME, long-term damage is done over time, although it's possible that some people who manage to stay at the mild level may not develop the same kind of long-term damage. I think that the longer you are ill and the more severely ill you are, the less likely it is that you can achieve full recovery, although significant improvement is still possible, imo. I suspect youth also comes into play in recovery possibility.

Another suspicion I have is that each PEM episode (real PEM, not only exercise intolerance from OI) causes permanent, or at least long-term, damage. Mild patients who don't PEM often, or severely, may have less damage than severe patients who PEM from taking a shower or making a meal. Long-term patients, even mild ones, have probably accumulated more PEM damage than patients who have only been ill 6-12 months.

This is why I am infuriated that so few PWME can get aggressive care early in the illness. I suspect conservative medicine is condemning far too many people to permanent damage and life-long disability that might have been prevented with reasonable treatment early in the illness.

 

[Sean]

I will be very surprised if there is not some permanent damage correlated with 1) the length of time one has been sick, and independently with 2) the number and degree of PEM episodes.

The behaviour of vascular structures, especially peripheral, is where I would start looking.

 

[redaxe]

\
The third (me) was the most severely ill (bedbound) and continuously ill the longest, I think, at 5.5 years. I improved significantly under Dr Lerner's care, but did not improve past housebound. I gained additional improvement after moving on to another specialist after I plateaued under Dr Lerner's care. I continue to take antivirals on and off, even under the new specialist.

I hope I'm not being too demanding but may I ask what your new approach is. So far I seem to be doing reasonably well on antivirals but I'm just aware of the need to be proactive in seeking treatment in case I need to change strategy.

Regarding PEM I think you're right. See my illness was building up for months after I had the initial flu malaise (every stressful event and exertion accelerated it) but I didn't really realise the risk of continuing to exercise although now that I remember there were definite warning signs but I ignored them.
After I ran a 20km event the next day is when I realised something wasn't right as I felt really weak and crappy - And I mean really weak. Not just the feeling from doing a hard exercise but something totally different. This feeling was like something was broken so obviously I had done some lasting damage possibly to the vascular system. When I caught up with friends a bit later they were 'high-fiving' each other and laughing so that was confirmation. I had a high degree of fitness so I knew it wasn't a case of being unprepared either.

I soon found out after that when I tried to do another exercise I felt much worse much sooner so I quickly realised I should stop exercise. So that big run really set things in motion. Had I of not done that and quit the exercise immediately maybe I would have pushed this into remission more easily.
Stupidly I tried exercise at times I thought I was in remission, once so intense that I almost vomited. Very bad idea as it always provoked a relapse.
What I've learned is that even if you feel 100% you cannot do exertive exercise until you are 100% sure the illness has truly disappeared. A lot of conditions are like that - for instance you might feel like your sprained ankle is fully healed and try and run on it and then find out otherwise...

 

[mgk]

I have a lot of hope for continuous monitoring technology in the coming years. Imagine something like a continuous glucose monitor that monitors a lot more parameters. You would be able to see patterns that you wouldn't be able to see with the periodic, specific testing that is done currently. You would be able to see what was happening during a crash, or what was going on when you were feeling well. I think that kind of day-to-day information is going to be key in understanding CFS and all of its lookalikes.

 

[SOC]

I hope I'm not being too demanding but may I ask what your new approach is. So far I seem to be doing reasonably well on antivirals but I'm just aware of the need to be proactive in seeking treatment in case I need to change strategy.

We added Florinef and a tachycardia med, synthroid (T4) and liothyronine (T3), Equilibrant, LDN, Vitamin C, fish oil, methyl folate, TMG, high dose (1800-2400 mg daily) CoQ10, and most recently acetyl-carnitine, PQQ, and a biggie -- IVIG. Another medication which is not new, but valuable, is Trazodone for sleep.

My daughter now takes most of the above plus midodrine and inosine.

There has also been talk of Immunovir and ketotifen (both of which we'd have to source from Canada), but we're waiting on those until we see how some other things are working out.