What is your ME type?

[Rosie26]

I'm often trying to find other ME's with my type ME. I know PEM connects us all but I am interested to see who travelled my way as in never feeling the same after a bacterial infection when I was 20. And then years later a flu brought on my mild onset and then another flu brought on my severe onset.

It would be great if you all could list how things were for you like this:

1. What type of onset?
- slow/gradual, or sudden. (example)

2. What were your triggers?
- bacterial then flu, or virus, vaccination, EBV, other, I don't know. (example)

3. Show the length of how your illness has progressed over the years.
- mild - severe - moderate - moderate/severe. (example)

4. What year did it all begin for you?
- 1984. (example)

5. Do you have POTS?
- yes. (example)

6. What age were you at gradual or sudden onset? Please put age and type onset.
- 20 years old, gradual. (example)

You could just post your answers by the numbers, 1.2.3.4.5. to make it easier for you. I will do a post of my own answers next.

 

[Rosie26]

1. Gradual onset.
2. Bacterial, then flu and then another flu.
3. Not feeling right - mild - severe - moderate - moderate/severe.
4. 1984.
5. Yes, I have POTS.
6. 20 years old, gradual.

 

[tandrsc]

1. What type of onset?
- slow/gradual,

2. What were your triggers?
- no trigger, I have always tired easily and needed more sleep than everyone else (even as a child)

3. Show the length of how your illness has progressed over the years.
- mild -mild/moderate - moderate - moderate/severe - moderate -moderate/mild -mild -mild/moderate - moderate/mild - moderate

4. What year did it all begin for you?
- suspect I've always had it, but started to notice 1978

5. Do you have POTS?
- I don't think so, but suspect I've had it in the past

6. Never right, but started to notice my tiredness wasn't normal at about age 11.

 

[lisaadele]

1. gradual/slow onset
but also wonder about how this is classified for me - being mild at onset makes it hard for me to know if it was gradual, or acute with mild symptoms to start

2. triggers - I suspect were two bouts of mono (hospitalized at age 5 with and again age 19)
I also define triggers for making myself worse, which for me was lack of diagnoses and lack of medical support which resulted in my pushing to a big crash

3. started mild (I would also say at very beginning not feeling right as a kid); progressed to moderate

4. onset - since childhood I think

5. have not been diagnosed with POTS

 

[madie]

1. Gradual onset
2. No known trigger
3. mild => moderate
4. 1985
5. no POTS

 

[Veet]

1. What type of onset?
First, a severe gastro illness, after which I eventually labelled myself chronically fatigued. I carried on with my life, but there was something wrong.

Then, 3.5 years later, work/travel in 2003 European heat wave. I had some sort of melt-down one day, and never recovered. I believe now that underneath the many symptoms I've been able to resolve, my basic levels of energy remain pretty non-changing. I've learned to manage far better, so no more crashes.

I believe I always functioned w/ an energy deficit, secondary to low thyroid and B12.

2. What were your triggers?
non-specific gut/flu episode. Immediate trigger: heat stroke.

3. Show the length of how your illness has progressed over the years.
- probably always moderate, in that I live much of my life on my bed, lying and reading, but have not been bed-bound, in my bed. The biggest difference in my current life is having detoxed and gotten the correct micro-nutrients, I'm no longer lurching from crisis to crisis. And my nervous system is calm more than for all of my life. During the last 3 years I ridded myself of the irritability and agitation I'd struggled with for a lifetime. So I'm comfortable. I tend to go out for shopping once/week. If necessary, I can do more, in short bursts.

4. What year did it all begin for you?
"chronically fatigued" from Oct. 1999; ME from June 2003

5. Do you have POTS?
I've just labelled myself POTS-lite. It ticks the boxes of my current symptoms.

6. Initial incident, 50 yo; eventual collapse 54 yo

 

[weyland]

1. Sudden onset
2. Enterovirus
3. Moderate (mostly housebound) -> More severely moderate (mostly bedbound)
4. 2014
5. Yes I have POTS
6. Age 32 at sudden onset

 

[Rosie26]

I've just added a 6th question everyone if you could edit your posts and add if you don't mind.

 

[IrisRV]

Me
1. very sudden onset -- within hours. However, we'd been saying that something didn't seem right with my immune system for years, but no energy issues
2. unidentified flu-like illness with extreme exhaustion and cognitive dysfunction on top of the usual flu symptoms
3. mild-moderate --> moderate --> severe --> moderate -->mild-moderate
4. August 27, 2004 (Yes, it was that clear to everyone around me. It was a night and day thing.)
5. Yes, some form of dysautonomia/OI anyway.


My daughter
1. sudden onset
2. unidentified flu-like illness -- Based on the timing, it looks like I gave it to her.
3. mild--> moderate --> severe-moderate --> moderate --> mild
4. Sep 2004
5. Yes, some form of dysautonomia/OI anyway.


It's worth mentioning that we seem to have very different definitions of mild/moderate/severe. Something more descriptive might give better comparative data.

Some categories to consider for a more descriptive scale:
able to work full-time but limited
(there have to be more levels in here, but I can't think how to describe them briefly)
generally housebound (able to do critical chores like grocery shopping, but no activities for enjoyment outside of home)
mostly housebound (can get out on your own sometimes in a very limited way)
completely housebound
mostly bedbound
bedbound
completely bedbound and barely surviving (ex: Whitney DaFoe)

My gut feeling is that there's three sub-levels within each level. For example mild-moderate, moderate, severe-moderate. All the bedbound levels would be severe, all the housebound levels would be moderate, the less restricted levels would be mild. Or maybe I've got it all wrong.

Of course no scale really works because we trade off activities to function. Someone might be mostly housebound but able to do all their housework, while another person at the same level has to go out and work part-time (while damaging their health) at the expense of doing any housework. One is clearly housebound while the other obviously isn't housebound, but should be. Same level.

Thoughts?

 

[IrisRV]

I've just added a 6th question everyone if you could edit your posts and add if you don't mind.

I deliberately didn't answer the 6th question because it would be trivial to calculate year of birth using questions 4 and 6. I'm leery of putting out any personally identifying information out on the internet. Been burned before, not going there again.

 

[Rosie26]

It's worth mentioning that we seem to have very different definitions of mild/moderate/severe. Something more descriptive might give better comparative data.

Some categories to consider for a more descriptive scale:
able to work full-time but limited
(there have to be more levels in here, but I can't think how to describe them briefly)
generally housebound (able to do critical chores like grocery shopping, but no activities for enjoyment outside of home)
mostly housebound (can get out on your own sometimes in a very limited way)
completely housebound
mostly bedbound
bedbound
completely bedbound and barely surviving (ex: Whitney DaFoe)

My gut feeling is that there's three sub-levels within each level. For example mild-moderate, moderate, severe-moderate. All the bedbound levels would be severe, all the housebound levels would be moderate, the less restricted levels would be mild. Or maybe I've got it all wrong.

Of course no scale really works because we trade off activities to function. Someone might be mostly housebound but able to do all their housework, while another person at the same level has to go out and work part-time (while damaging their health) at the expense of doing any housework. One is clearly housebound while the other obviously isn't housebound, but should be. Same level.

Thoughts?

I'm not up to working that one out. If you or someone else could do a scale, I'll post it on my first post.

 

[Rosie26]

I deliberately didn't answer the 6th question because it would be trivial to calculate year of birth using questions 4 and 6. I'm leery of putting out any personally identifying information out on the internet. Been burned before, not going there again.

Yes, just what you are comfortable with everyone.

 

[tandrsc]

I'm not up to working that one out. If you or someone else could do a scale, I'll post it on my first post.

Action for ME have a rough description of severities on their site (https://www.actionforme.org.uk/what-is-me/introduction/):

• People with mild CFS/M.E. are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.
• People with moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for one or two hours. Their sleep at night is generally poor quality and disturbed.
• People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.

This might serve as a guide. Some of us probably fall between two of them, but we can put ourselves at something like moderate/mild or mild/moderate depending on which category we feel we more fall into.

 

[Snow Leopard]

1. Initially sudden onset for about 3 months, relapse-remitting rapidly on/off for a few years (with 'viral' symptoms), then it never went away...

2. Primary trigger was the oral Polio vaccine - glands up, trouble swallowing, severe lower limb weakness (could be described as flaccid paralysis). This was quite a change as I was quite fit and active beforehand. The lower limb weakness dissipated, but the fatigue and other major symptoms remained.

3. It started severe, was severe once again after the relapse-remitting period, improved to moderate and been slowly getting worse since then.

4. 1999

5. Sometimes - POTS was quite bad during severe periods, still effects me sometimes as a PEM symptom and also when I don't sleep well.

6. 15 years old, sudden onset.

 

[Rosie26]

Action for ME have a rough description of severities on their site (https://www.actionforme.org.uk/what-is-me/introduction/):


This might serve as a guide. Some of us probably fall between two of them, but we can put ourselves at something like moderate/mild or mild/moderate depending on which category we feel we more fall into.

Thanks, I will take a look at this this afternoon. I wonder if this whole thread needs to be in a members only. I will come back that.

 

[EYAKLLE]

I recovered on Viread and Raltegravir for ME.

ME is a non-cfs, non-post-viral type, non complex,non progressively persistent any old viral or hormone imbalance of a disease where you take any cytokine chemokines u pick n choose etc....type illness....
It is a very simple Melvin Ramsey defined illness that has no different vast varying spectrums.

Those are AntiRetroVirals medications I mention above.

Gradual
MMR/MR + unknown
Moderate severe to moderate to recovered
mid nineties
no pots
teenager


I was VAXXED with mmr/mr if relevant. Pot luck which vial that vaccine came from and how the lab stored animal n human cell lines for my vaccine batch.
If I was an infant it could well have been well-defined autism instead. Who knows? Wakefield. Mikovits.For the definitive autism mmr no link studies are in the process of being discredited n ripped apart into small pieces by William Thompson cdc whistleblower and the Vaxxed movie. De Niro hopefully will work it all out and find some peace with himself and get his answers. The negative papers on autism mmr including the definitive ones were unpowered. I know less about autism than I do about ME. But my impression is the diagnostic criteria for autism are too wide a spectrum too, and they did not look at the vaccine injured as a basepoint in all those studies I believe. There needs to be an investigation into lab production facilities and how cell lines were stored and/or not seperated n see if there is a transmission n contamination link of a common type of pathogen such as the retrovirus family strains that Ruscetti n Mikovits identified. Dont believe what the news n medical papers say. Trash in. Garbage out.
Catastrophic

Vaccines are important. They must be cleaned up and spread out over time and in single shots. Or made safer in production as a starting point. Vaccines are important.

True ME as defined above n true Autism as not studied in negative mmr papers, may well both be on the same pathology spectrum if a common agent is there. It is the common agent that could define what a real spectrum is.

The smart patients,smart doctors,smart families,smart researchers and smart good people have worked it all out.

No more delays. No more crawling the mud.
It s over. We see it for what it is. Very easy to coordinate negative papers over one month or one year or one decade. Like when a call center rings 100 people at the same time with an advert to spread its message.Very easy to encourage it n manipulate others into doing it n misleading them over what diseases really are. Even the worst researchers know that negatives can be plain meaningless as time goes on. Nothing smart in that.

Now that the truth faces us eyeball on what are we going to do about it?