Did you have a vaccination not long before developing ME/CFS?

[Deepwater]

Did you ever consider a macrophagic myofasciitis diagnosis? See this above post.

I hadn't even heard of macrophagic myofasciitis until a couple of years ago but I've definitely thought about it since, particularly as the symptoms described match my own to a tee. But I live in the UK, and how on earth would I get a diagnosis? MMF doesn't even seem to be acknowledged in the NICE Guidelines so far as I can see.

It's also complicated by the fact that, at many periods prior to the vaccination, I would have met a diagnosis of ME/ CFS - had problems on and off ever since glandular fever twenty years before the fateful vaccine. But I had been very well for about five years before the jab, and had in fact never been fitter, and I never before experienced many of the worst symptoms of the post-vaccine illness in any way, shape or form.

I wonder what would happen if I were to try to discuss getting an MMF diagnosis with my GP. Should I have a go and report back here how I get on? It would probably be good to know whether an MMF diagnosis is a practical possibility in England.

I don't live a million miles from Keele, so if the normal medical route fails, I wonder if it would be worth trying to get in touch with Chris Exley? Any thoughts?

 

[Deepwater]

You may want to Google w. John Martin, USC and stealth virus for expansion on how
this works. There’s also a recent post & reply here in PR, above re same thing with
Tetanus - and Prof Martin’s reply.
(See Dr W. John Martin’ paper on CFS and CMV, American Journal ofPathology, Vol. 145, No. 2, August 1994, examining a stealth virus; later updated. Sept 18, 2014, MedCraveonline.com, Journal of Human Virology & Retrovirology, article: Stealth Adaptation of Viruses: Review and Updated Molecular Analysis on a Stealth Adapted African Green Monkey Simian Cytomegalovirus (SCMV).)

That really is scary. I've downloaded the papers, which I have to admit go rather over my head.

But again, how would I be able to take this forward?

 

[Hip]

But I live in the UK, and how on earth would I get a diagnosis?

If you see @Max80's post on another thread here, he explains that he could not get anyone in the NHS interested in performing this muscle biopsy, so had to go to France for the biopsy and diagnosis. @Max80 said in that post he can provide the doctor's details.

I guess since French researchers have pioneered the study of macrophagic myofasciitis (MMF), that's where the diagnostic expertise lies. Though I would think it's worth enquiring in the UK NHS first.



However, I am not sure whether or not macrophagic myofasciitis can appear within days of vaccination, like the 1-day timescale of your post-vaccination ME/CFS symptoms.

This study finds that that the onset of MMF occurred an average of 7 months after vaccination:

As previously reported, onset of these clinical symptoms was always posterior to, and delayed from, immunization, median time elapsed from last vaccine administration being 7 months (range 0.5–84) for initial systemic symptoms, and 11 months (range 0–72) for first myalgia.

They say the fastest onset they encountered was 0.5 months (two weeks). So you might want to investigate whether the 1 day time to onset is compatible with MMF, or whether this is just too fast.

Maybe because you were sort of predisposed to getting ME/CFS (having had ME/CFS symptoms earlier in your life), that's why the MMF appeared so quickly (if you do have MMF)?



Interestingly enough, the study also mentions that:

It is now clear that rapid emergence of MMF in France resulted from the specific combination of 3 factors : (1) replacement of the subcutaneous route by the i.m. route of vaccination in the early 1990s; (2) widespread extension of HBV primovaccination to the French adult population in the same time; and (3) the choice of the deltoid muscle (also used for i.m. vaccination) for routine muscle biopsy in France whereas biceps brachialis and quadriceps femoris muscles are preferred in most other countries.

So I am guessing that MMF tends only occur from intramuscular injection, not by subcutaneous injection.

 

[Max80]

But I live in the UK, and how on earth would I get a diagnosis?

I wonder what would happen if I were to try to discuss getting an MMF diagnosis with my GP. Should I have a go and report back here how I get on? It would probably be good to know whether an MMF diagnosis is a practical possibility in England.

I know of one doctor in the UK who has tested for, and diagnosed, Macrophagic Myofasciitis. This is in the south west of England. I have heard of a couple of other doctors in the UK, but their experience of the illness may be limited.

I discussed MMF with my GP. He had never heard of the illness but he was very helpful and he referred to 3 different neurologists, but they were a waste of time to be honest.

I went to France, because it was easier and cheaper for me than going to the south west, and I wanted to be tested by the experts in the illness.

I haven't had any treatment for the illness, as there isn't really anything the doctors can do. The aluminium is carried around the body by macrophages to the spleen, draining lymp nodes and other organs, and slowly accumulates in the brain. I know Professor Chris Exley published a research paper with the expert doctors in France on MMF back in 2008. The doctor in France advised me that there is no treatment. I have been in contact with some patients in France (one has had MMF for 20 years), and the only advice they gave was pacing.

 

[HelloGoodbye]

Hey @Max80 thanks for the info on MMF. I had a hepatitis b vaccination on Dec. 8th, 2017 and noticed skin issues 2 days later and significant muscle weakness 6 days later. I got a booster early Jan. before I made the connection that it might have been the vaccination causing my symptoms. My symptoms mimic CFS but obviously no diagnosis has been made since it hasn't been 6 mo.

I'm trying to determine if I have CFS or MMF. When did you get your symptoms/how bad were they when you first thought you had CFS? Did you have any PEM? Did you also have any noticeable skin involvement?

Thanks!

 

[Max80]

Hey @Max80 thanks for the info on MMF. I had a hepatitis b vaccination on Dec. 8th, 2017 and noticed skin issues 2 days later and significant muscle weakness 6 days later. I got a booster early Jan. before I made the connection that it might have been the vaccination causing my symptoms. My symptoms mimic CFS but obviously no diagnosis has been made since it hasn't been 6 mo.

I'm trying to determine if I have CFS or MMF. When did you get your symptoms/how bad were they when you first thought you had CFS? Did you have any PEM? Did you also have any noticeable skin involvement?

Thanks!

As you say, CFS won't be diagnosed until 6 months. MMF won't be tested until 2 years have passed since the last vaccination. Muscle weakness and fatigue are common symptoms of a Hep B vaccination, but are temporary in most cases.

My first symptoms started 6 weeks after vaccination, with fatigue and headaches. These were mild and intermittent (1-2 weeks every 2-3 months) for the next 4 years. I also started to have gastrointestinal problems (abdominal pain, feeling full quickly when eating, bloating). I didn't consider the vaccine was the cause.

I had a booster vaccine 4 years after the last vaccine. 10 weeks later I started to have severe fatigue and cognitive problems, and 10 months after the vaccine I started to have muscle pain and muscle weakness. These symptoms are persistent. I still have the gastrointestinal problems.

My symptoms have a significant affect on me every day, fluctuate minute-by-minute throughout each day and are very unpredictable. I have PEM, with worsening of symptoms later in the day or 24-48 hours after physical or mental exertion. I rest after doing most activities, which helps to minimise PEM and stop the symptoms becoming severe.

Since the last vaccine I have dry skin on my hands, feet, face and lips - a common symptom for people with aluminium toxicity apparently.

 

[Wendy B.]

Got MMR booster vaccine in college about a month before symptom onset.