Could COVID-19 – with as much devastation, pain and suffering that it’s caused – have a silver lining for chronic fatigue syndrome (ME/CFS)? A brilliantly written Washington Post article, “Researchers warn covid-19 could cause debilitating long-term illness in some patients“, by two ME/CFS sufferers – Brian Vastag and his wife, Beth Mazur – suggests it just might.
Vastag, once again, has popped into the media mainstream at a crucial moment for ME/CFS. Vastag’s hard-hitting Washington Post Op Ed., “I’m disabled. Can NIH spare a few dimes?“, which took the form of a letter to Francis Collins, put the NIH director on the hook for the neglect shown ME/CFS, and helped garner support for the NIH ME/CFS research centers. That letter was featured in a major Atlantic piece on ME/CFS, and an NPR segment on ME/CFS.
Hopefully, this one will make a difference as well. The Washington Post is visited by 80 million people every month, and the current article has been picked up by at least five major media outlets thus far. (Update – as of the afternoon of the 31st, the article has alsomade it to press outlets in Seattle, Portland, India and Thailand!)
Brian Vastag’s earlier article on ME/CFS prodded the NIH to fund ME/CFS research centers.
Something’s changed over the past month, with the result that NIH is actually getting a bit involved. A month or so ago, I heard that the NIH was not doing any extensive post COVID-19 studies.
Now it seems at least one aimed right at ME/CFS is in the works. The article reports that Avindra Nath – the head of the NIH’s Intramural ME/CFS study – is “gearing up” for a similar COVID-19 study and plans to bring COVID-19 survivors into the hospital this summer to study them.
Nath’s COVID-19 study is probably not that big, but is potentially very important as Nath, over the past three years (yes, three years!) has surely gathered hordes of data points on ME/CFS patients, and has surely been learning what to look for. (Nath’s stated focus on energy production in the COVID-19 study suggests that he is finding energy production problems in ME/CFS.)
If Nath can replicate his ME/FS findings in post-COVID-19 patients, and the expected wave of COVID-19-triggered ME/CFS shows up, ME/CFS could get hooked into a major health concern and a hot media topic at the same time.
If there was any researcher we wanted involved, it would probably be Nath – a well respected, NIH post-infectious disease specialist and neuroscientist who’s become immersed in ME/CFS. His results will be heard.
Avindra Nath will be studying both post COVID-19 and ME/CFS patients at the NIH.
With continuing media coverage and more articles like this one – this is at least the third article on problematic COVID-19 recoveries to show up in a major media outlet thus far – the NIH may be forced to do what it’s never done before: a) take post-viral disease studies seriously; and b) fund more ME/CFS work. If a worst case scenario occurs and between 50-70% of U.S. residents catch the coronavirus, millions of Americans could come down with ME/CFS.
What a perfect time for a funded RO1 grant opportunity to study the effects of post COVID-19 – and learn about ME/CFS this is.
The other study the article brings to light, the IMPAAC study, is a very large (n=2000), longitudinal (1-year) study whose focus on hospitalized patients – who could remain ill for a number of reasons – means its link between post-viral problems and ME/CFS is going to be tenuous. The study’s deep dive into the immune system could, though, go quite a ways to help us understand more about how the immune response to an infection can go awry and result in long-term disability.
“By analyzing the immune responses of a variety of hospitalized patients, researchers aim to better understand at an immunological level why some cases of COVID-19 worsen while other patients recover. For example, researchers may be able to determine if antibodies develop at a different rate in people who experience severe symptoms of COVID-19, if specific antibodies or other immune components are associated with a faster recovery, or if they are necessary to clear the virus from the body.”
The study’s focus on assessing cytokines will surely assess whether cytokine storms early in the illness play a role. Past cytokine studies in post-viral illness have had mixed results, but some sort of, perhaps, mini cytokine storm early in the illness makes sense given that severe symptoms during an infection are associated with having a higher risk of coming down with ME/CFS.
Mady Hornig at Columbia University is also going to follow COVID-19 patients with neurological symptoms in a population group (minorities) that sorely needs study to see who develops ME/CFS. No word yet on the extent of the study.
Solve ME will be tracking how people with ME/CFS do after COVID-19 in the You + M.E. Patient Registry that will be launched soon. In a nice touch, it’s also established partnerships with established COVID-19 registries and apps to include questions that ask participants whether they have developed post-viral ME/CFS-like symptoms. If they answer yes, they will be referred to You + M.E. so they can provide more comprehensive information.
Plus, there’s the OMF Ron Davis COVID-19 ME/CFS study that’s attempting to get right to the heart of the matter and uncover the molecular changes that occur as someone fails to recover from COVID-19 and comes down with ME/CFS.
Hopefully these are just the beginnings of a massive effort to study COVID-19.
Other Potential Benefits – More Allies, Better Doctors
Other benefits from the COVID-19 pandemic, including more allies and more doctors who get it about ME/CFS, may accrue.
The word about post COVID-19 turning into ME/CFS is getting around. Post COVID-19 recovery groups appear to be well aware of the potential ME/CFS link, and should, over time, turn into important allies. The Washington Post article mentioned the Body Politic group which ran a survey showing that many coronavirus symptoms overlap with those of post-viral fatigue syndrome. The group’s analysis suggests that just 20% of coronavirus survivors in the group can expect to be symptom-free after five months.
One person having trouble recovering from COVID-19 recently commented on the “Given What You Now Know, What Would You Have Done Differently With Chronic Fatigue Syndrome (ME/CFS) and/or Fibromyalgia” post that she was thankful for the advice ME/CFS/FM patients gave.
“Thank you so much to all those who have commented on this thread. I came across it as I have post-viral fatigue like symptoms after contracting COVID-19. Your stories, and others I have heard similar, have helped convince me I need to rest and not try to “push through.” Thank you x a million!
Ron Davis pointed out that if doctors get the message to look out for post COVID-19 symptoms, COVID-19 could become the biggest educational tool ME/CFS has ever had. Even though perhaps 5-10 percent of significant infections turn into post-viral fatigue and perhaps ME/CFS, it’s been a hidden, tucked away and neglected issue for decades.
“If you point out the fact that you might not ever get over covid-19, it’ll put people’s attention on this problem, We need doctors to be reading covid-19 information and be on the lookout for people who never get well. I think that’s extremely important.”
The opportunity now is for a bright light to finally be shown on the potentially devastating, long term effects of an infection. Vastag and Mazur closed the article with just that thought.
“Given the historical neglect of ME/CFS — very few medical students even learn about it — many physicians and researchers who follow covid-19 patients may think they’re discovering a new phenomenon in the patients who are slow to recover. Instead, they’ll be rediscovering a common illness that’s been known, and neglected and afflicting many people — for decades.”
- The more attention an ME/CFS article gets the better. Please check out the Washington Post article here.
- Vastag’s ME/CFS Intramural study visit revealed he may have a rare muscular disorder – Glacier and me: Amid a stunning landscape, an ailing science journalist weighs his own uncertain life span.
Update – Check out Ed Yong’s superb Atlantic article “COVID-19 Can Last for Several Months” on the difficulty recovering from COVID-19 which mentions ME/CFS.
Please stop spreading fake news. ME is not caused by corona viruses. A disease named ‘ME/CFS’ doesn’t exist.
A debilitating and devasting condition known as Me/CFS exists. Scientists study it, patients are afflicted with it, social security sends disability payments because of it, the CDC, WHO, and IOM have a healthy respect for it, and millions of people lose everything when they suffer from it. We are fortunate that the nation’s top universities and several hard pressed but persistent and dedicated MDs are working on it. Instead of dismissing it. We, the ME/CFS community, are as close to the “walking dead” as real life can get. Looks like COVID 19 might bring on the Zombie Apocalypse that might finally get some research funding. Too bad it had to come to this.
It is too bad yet it is also good that something good will – if we – and I mean researchers, doctors, our supporters, advocates and us – keep sharing and working.
Really want to thank and acknowledge Brian for getting the message out once again in the nation’s capital – in the newspaper all the politicians read!
Who knows what will come out of it – but we do know that once again the word is spread there and in others outlets that have picked it up – about ME/CFS 🙂
Thank you, Katherine, for your articulate response.
If you don’t have it! It can be caused by many types of viruses.
Then, You can’t understand it.
Read about it before you think you know.
My, aren’t you a ray of sunshine! Please stop spreading fake news yourself.
I suggest you take a breather, sit back, and read through some of the many excellent articles on here highlighting *current scientific research* into MECFS.
And, while you’re at it, you may want to examine your conscience for why you chose to make such a derisive comment on an article giving hope to so many people who suffer.
Post SARS Syndrome …
Moldofsky and Patcai BMC Neurology 2011, 11:37
http://www.biomedcentral.com/1471-2377/11/37
Okay everyone we can all go home now because this guy says ME/CFS dosen’t exist.
LOL!!
What an illuminating insight into character does peoples response to ME/CFS give us.
LOL, Isn’t that what many believe? I know your intent of this comment is made as a joke of disbelief. So little is understood, yet so much needs to be learned. Too bad there is so much ignorance out there and those who choose to be/stay in disbelief.
Maybe, NOW…..we will get more acknowledgement.
ME/CFS is not fake news, I developed it after a severe GI virus when I was 33, and it often develops after a serious infection or virus, and that is why it could develop after a serious coronavirus infection. Sometimes people do not recover normally after an infection, and the body can go into a “dauer” state or fatigued state as a result of the body being in “cell danger mode” from the infection. Sometimes serious inflammation can occur after being exposed to the viruses like mono, hhv6, etc. , and patients can continue to feel very fatigued and have symptoms like brain fog, swollen lymph nodes, brain inflammation, sore throat, memory and other cognitive issues, and muscle pain for years. Its a very serious illness because one can be disabled for years, and I was bedridden 90 percent of the time the first seven years. Its difficult to improve when a condition is misunderstood and there are limited or no treatments available.
Maybe we can just say that, putting all labels aside, these efforts are for all the people with debilitating fatigue, post-exertional malaise, pain, sleep, cognitive issues, etc. after failing to recover from an infection.
Hi Cort. I really appreciate all that you do, but please, please do not use the term post-exertional malaise (PEM). “Malaise” principally connotes a psychological condition and use of the term to describe what people with chronic fatigue suffer only adds to the totally erroneous impression that we have a psychological and not a physical illness.
There’s no easy way out of this. The term does have negative connotations. On the other hand it has become a technical term and is an essential part of ME/CFS lexicon. Ironically the term for this disease’s hallmark symptom has some baggage.
Medical definitions are not psychological in nature but they hardly capture the what we know as PEM.
https://www.bing.com/search?q=malaise&cvid=ab3e0ca92a5649e7ad4b3df76c75651b&FORM=ANNTA1&PC=U531
Malaise is described as any of the following:
a feeling of overall weakness
a feeling of discomfort
a feeling like you have an illness
simply not feeling well
It often occurs with fatigue and an inability to restore a feeling of health through proper rest.
“Malaise is a general feeling of discomfort, illness, or lack of well-being.”
“Definition of malaise. 1 : an indefinite feeling of debility or lack of health often indicative of or accompanying the onset of an illness An infected person will feel a general malaise.”
Merriam Webster
Malaise is a symptom that can occur with almost any health condition. It may start slowly or quickly, depending on the type of disease. Fatigue (feeling tired) occurs with malaise in many diseases. You can have a feeling of not having enough energy to do your usual activities.
Malaise: MedlinePlus Medical Encyclopedia
medlineplus.gov/ency/article/003089.htm
What to replace it with? Penne was tried and didn’t catch on years ago.
I’m glad that we agree that “malaise” is a bad term, because it doesn’t even begin to describe what we feel, which is exhaustion. Also, it’s not only after “exertion” that we suffer — it’s often after any kind of activity. These days, I am exhausted after getting dressed. So, instead of PEM, I’d suggest post-activity exhaustion. It doesn’t lend itself to a good acronym, but it’s more important to get the description right than to have an easy way to express it.
Hey Cort,
I’ve had CFS for about 15 years now. The last 5 years I have been doing better but do have bad days. Because I’m so lucky, I got covid too! I am in Quarantine now. Apparently my symptoms are mild- nausea and loss of taste and smell. I had a bad fatigue episode a week before my acute covid symptoms and I wonder if it was the cfs or the covid! Making me a little crazy. I really pray that my fatigue isn’t worse after this Illness. I’m in the process of finding a job! Just got my MSW. Have you spoken to anyone with cfs that recovered from covid? I know a lot of covid patients are having symptoms lasting for over a month. I’m doing my best here trying to not get too focused on my symptoms (brain retrainer here).
Hi Sipora,
Cort’s March 29, 2020 coronavirus article paraphrases Dr. Klimas in one of her videos (linked in the article):
“Prognosis – Much like the flu, you won’t be better as quickly as healthier people – plan for 4- 6 weeks but if you get sick bear in mind that the worst part is usually the first week.”
The March 29th article is here:
https://www.healthrising.org/blog/2020/03/29/coronavirus-v-lipkin-bateman-and-klimas-talk-plus-treatment-updates/
Hi Sipora – check out the poll we recently did of people with ME/CFS/FM who have had symptoms of COVID-19. For most people COVID-19 is showing up as mild to severe cold – https://www.healthrising.org/blog/2020/04/22/coronavirus-silent-hypoxia-pulse-oximeter/
Good luck! 🙂
That would sound like good news. Sorry to be a downer, but I can’t help but be concerned that people who have it worse or, God forbid, die aren’t going to be counted in the poll. t’s not like their loved ones will report for them.
Agreed. It must be missing those people. On the other hand so many people have had the symptoms and answered the poll that I’m hopeful that most have gotten through it OK.
Hello Sipora – pleased to say I’ve managed to avoid it so far but one important thing from research. T cells are crtitical in fighting this off. They dont activate without vitamin D. So if you are normally stuck indoors get a supplement now. If possible get your Vit D levels checked first so you dont overdo it. https://www.bbc.co.uk/news/health-52754280 and https://www.sciencedaily.com/releases/2010/03/100307215534.htm
Also this disease makes blood more sticky and the blood clots that can form can cause serious disease. I have some aspirin and plan to take a low dose if I get symptoms, you may want to discuss anti-coagulants with your doctor. https://www.medicalnewstoday.com/articles/covid-19-ive-never-seen-such-sticky-blood-says-thrombosis-expert
The second week is often the worst, good luck.
Thanks for always keeping us up to date Cort – it would be great if something positive would come from all this.
I read something the other day concerning folks who are currently having chemo – said that they actually could fair better because their immune system although compromised can still likely fight well enough yet they won’t be in danger of the overactive immune system causing the dangerous cytokine storm. Interesting.
Interesting – maybe even a silver lining to having cancer! I would shocked if we didn’t learn so much about the immune systems response to viruses out of this. That could help with other pathogen triggered chronic illnesses like autoimmune diseases.
yes I was thinking that to cort. Hopefully this connects dots with cancer and immune system and other viral conditions like covid 19. The more reserchers the more it connects with other research the better. I do think people in general are understanding how devastating this disease is and its complications. Ie cancers ect.
Any effective treatments to give us a better quality of life would be a blessing. Thanks for fighting for us cort and always keeping up with latest cutting edge news. I still believe we need someone very powerful to cut through red tape and get this disease funded properly!!!
I have not yet pulled my resources because timing and what is happening in this country right now. I plan on trying to reach commander and chief through a close ally as he can and will cut right though red tape!! Before I here hate about trump he is the only president that we have and is unconventional and has done this for many issues and got things done. none of other presidents did not even try.
That said we have to get it on his agenda with information on suffering and how we have suffered for so long unfairly!! I think if I can get something in writing I can get it through the right channels to him personally!! I will need some help?? Cort we should talk?? I’m controlling my temper with the guy on first post by the way. But if he sees this I will break him in two if ever he wants to say this is fake disease to my face>>
As far as covid my dad was in nursing home in NJ and is in very bad shape with covid because of governor murphys laws. My information told me at beginning of this covid it was self limiting and will burn out completely by September. I do believe this is true based on his past with me. That said I hope we go to work on covid asap.
Thanks cort and god bless everyone here
There should be at least 2 positives from this – doctors will finally have to recognise the importance of vitamin D (see research posted above) and people may become more careful about handwashing. Both should improve health by reducing the spread of various infections.
I hope the research on T cells will produce more help, not holding my breath though.
Hi Katherine, Danielle, Anne and Jimmy.
Just to let you know, Guido den Broeder – the guy above who said ME/CFS doesn’t exist, is actually a long-time, very sick ME patient and advocate. English is not his first language, so he didn’t explain himself very well!
He is one of those staunch ME purists: ME=Myalgic Encephalomyelitis as defined by Ramsay/CCC/ICC. He fiercely opposes (rather annoyingly sometimes, I agree) any conflation of CFS with ME.
However, since Cort … and I’m assuming, most of the rest of you … are based in the USA, I can’t see how, given your own history with this disease, you can do anything but use the amalgamated term ME/CFS until such a time as more is known about it and its respective phenotypes.
Guido: It’s time to get off your hobby horse here. Please. Although I have valued some of your contrubutions in the past, in various forums, you have managed to hurt many people on this site with your poorly-phrased remarks. These folks are just as sick as you and, like you, deserve respect and to have their sickness taken seriously.
And Cort: Thank you for the many years of work you have done in this area. Your posts have encouraged and helped a lot of people. I certainly am one of those. Bless you 🙂
Simply hoping they won’t diagnose ME(cfs) too soon in post-covid patients. It takes a lot of recovery time plus they have specific symptoms which we don’t have. And vice versa.
If you follow a few groups you notice the similarities but also the differences. They talk ‘fatigue’, I never do. I talk exhaustion, never ever feeling any energy in my body, I talk of a horrible flu-like toxic feeling in body and head. They talk about lack of oxygen (not air hunger but true lack of) …
They seem to relapse-remit.
I don’t remit. Haven’t for 18 years.
Fatigue is not PEM (PENE), which for me is bone crushing weeks or months on end Neuro-immune related.
It’s not ‘I go upstairs & need to rest & then I can do sth again’.
PVFS for sure will become reality in a % of post-covid patients. As in post-SARS. Allthough 2 studies made ‘psychosomatic’ patients of them too.
I’m glad some officials see the possible tsunami of chronically ill post-covid patients coming … and yes many lessons can be learnt from decent thorough biomed ME & CFS research.
But why does it taste so … bitter … that it takes a pandemic for them to finally acknowledge the research & (perhaps?) be prepared to invest a bit more?
Why does it taste so bitter to read about NIH willing to do studies on immunology, cytokines, mitochondria problems etc when soooo many good research has already been done?
Why does NIH & CDC sound like they’re ‘on it’ while decades passed in which they -I’ll be polite- practically didn’t do a thing for all of us. They spent more on male boldness. Enough said.
Glad they are saying they’re stepping up but I sincerely hope they don’t discard the most valuable research that was done by people who did not get support from them.
Prusty, Younger, Nakatomi, Barnden, Goodwell, Maes, … and so many more whose research should be “the starting point”.
Immunologic, neurologic, inflammatory, physiologic, mitochondria & metabolic repeated findings are solid.
How many more ‘studies’ do they need to accept those findings as real, proven, true, serious, …. and go from there?
I don’t relapse remit either but if you look back Elise do you remember relapsing-remitting in the early stages? I believe some people got a cold, seemed to get better, started going out again, relapsed, fell to a lower baseline, tried to get going again, relapsed etc. etc. and eventually it was just on all the time.
Thanks for highlighting it, Cort.
Thanks for another timely piece in Washington Post!
Thank you, Brian!
And Beth!
I want to give hope to those worried about having CFS/ME or Fibromyalgia and getting COVID-19. I had CFS/ME for 2 years from 2000-2002 and slowly increased my recovery for years afterwards.
I had an early case of COVID-19 in mid-Jan, likely Asian strain. Before knowing I’d had it, I worried about my CFS vulnerability due to immune differences. But I had a mild case lasting almost 2 weeks.
Still, like many others, I had relapses (2, each less bad) and most of the symptoms roving around my body — before these were reported in the press. Even tachycardia, documented accidentally in an annual checkup by EKG. (BTW, by total coincidence, I had a lab workup with somewhat extensive hormone, Vit D, and some other organ/metabolic info the morning before I was exposed, so I have my “pre” levels. For any Drs/researchers that would like to see it.)
At the time, I said that the process of migrating to various body systems felt like CFS (during which I had 2 active viruses, 2 forms of pneumonia, and systemic candida verified by PCR — simultaneously). I know what it feels like when opportunistic viruses fight back. I get all over them with many supplements and rest.
My roving symptoms lasted for 2 1/2 months. I told people that I think some people are going to take a long time to recover — months — and a smaller proportion might experience a Post-Viral syndrome. Sadly, this is coming true.
However, I have looked into the literature on COVID-19 vs SARS and MERS immune reactions and immunity. I believe we with CFS/ME might have an advantage more than a risk. For many of us, our T cells are overactive and T cells are turning out to be a potent fighting force against COVID-19.
In the original SARS patients, detectable T memory cells were found in about a quarter 6 years later, and in a smaller percent until now. These confer at least partial immunity. B memory cells, related to antibodies, were also found in SARS and MERS survivors 2-3 years later.
Again, we with CFS/ME tend to have overactive antibody immunity with less innate immunity. So it is perhaps more likely our cases will be more minor.
The big issues are cytokine storms and clotting. Nattokinase, natural from soy, originally recommended by an MD to address clotting in CFS/ME and Post-Viral Syndrome, can likely help here.
Good luck all!
Thanks Stephanie!
Maybe this applies to others:
Re: Covid-19 symptoms. We all have been mislead by white coat dogma. When one looks up covid-19 Sx first listed is Dry cough always, but I have been feeling quite bad without any cough and am positively in the high risk group times over. So looking up Covid-19 without cough, the first thing that pops up is me. Stating some people do not have the standard listed Sx but “Headaches and Dizziness with shortness of breath” the rest are ME/CFS multiplied. I hope that is the case so it will go away in a few weeks and once is enough for this damned covid thing. I don’t know if testing would be of any help? Lung involvement is the big worry.
When I read blogs like this and Brian Vastag’s article in The Washington Post, I certainly don’t have anything to add. It’s all there and seems so obvious. But still the situation persists for another day, week, year. How to break through that impenetrable, elusive barrier?
I don’t think there’s anything wrong with what the ME/CFS community is saying about their miserable situation. I just think the purse holders can delay, at their leisure. There’s nothing urgent or pressing to focus their attention on an issue, that is to them of minor concern. However those, who pass through that non-return valve, know only too well the hourly/daily hardships they endure, not only physically, mentally and emotionally but also financially, socially and so on.
The way individuals with ME/CFS are dealt with, is not benign. To be repeatedly stonewalled and sometimes persecuted for being unwell and having a disability is, I believe, a form of bullying.
Brian Vastag, Beth Mazur and Whitney Dafoe in his previous message released by the Open Medicine Foundation, give really clear descriptions of the experience of living with the illness and its devastating effect on their lives.
The dichotomy is striking between the administrators and those suffering with the illness. The patients need help but the people who have the power to channel funding to research have simply not been ensuring the job gets done. Effective organisations communicate well. Unfortunately some people in positions of power are very good at talking, whilst saying nothing. I think there’s been an astonishing level of moral dereliction, that has continued unchecked for decades, in the ME/CFS realm.
But what I sense now, is that there are just so many talented people out there researching this illness, advocating for people who are unwell and like Brian Vastag, writing articles in prestigious newspapers, with a powerful readership. I believe that we must reach a tipping point soon. As Cort writes about Avrinda Nath’s study ‘His results will be heard’.
Hi.
I have ME/CFS since 1997.
I have fibro too, and lots more.
I live in liverpool in the uk.
I can see you guys will have hope in the future.
But all they ever offered us, was graded exercise and CBT.
Even after the pace trail they did was proven to have been deliberately false.
NHS England went on with the above therapies.
Ive now just been diagnosed with An kylo sing Spondulitis .
My 7th autoimmune disease and my 16 chronic illness.
I no one couldn’t make it up.
I’m at home, never been in hospital or had anyone look after my case.
My gp referees me everywhere.
But ive not one specialist looking after me..
I had the initial time at the CFS service and it made me worse.
I find it hard to get any disablity and have no family or friends that help me.
For millions of us in Uk thats are reality.
Im 59.I doubt ill make it to 60.
Im still getting the abuse and the non believing from family and the wider public..
Im marked as being mental.
Hi Annie,
I’m so sorry you’re having such a horrible time. I’m actually English but I live in Ireland. I think the situation you describe is similar here.
I believe that amongst other things – prejudice, poor science and the history of a lack of research in this area, has allowed the inappropriate psychological explanation of this illness, to become so well established.
This has resulted in so much harm being done, for decades.
My family, particularly my younger brother and sister, (who are twins) launched what I imagine they thought was some sort of ‘intervention’, I think to ‘challenge’ my ‘denial’ that I was mentally ill and had an eating disorder. They were quite aggressive. I found that extremely difficult to endure.
My sister has a friend who’s a GP and I wonder whether this may have been where the ‘expertise’ was originating from…
Thankfully my sister’s in the UK and that brother is in Seattle. So I just refused to communicate with them. To say I was under siege, is an understatement.
My sister and I ended up having a ferocious text/email exchange and polite communications are resumed. However no mention is made of my ‘illness’.
I feel for you – what can I say? It’s just so awful.
The PACE nonsense is being reviewed and the UK is working on a revised set of recommendations. They were supposed to report in the autumn, this year. Hopefully the harmful practices, that have been pursued by some will be discarded.
I send you warm wishes,
Tracey
We can always call it what it is, xenotropic murine leukemia virus. A dirty mouse leukemia from contaminated vaccines from pharma who cannot be sued for causing harm via a bill signed in the 1980’s by Ronald Reagan. Our bodies are not naturally unable to heal itself, this is a manmade illness that has mutated our dna with a rna virus. They know about it. But if they admitted we were all getting dirty vaccines that would be the end. So they let us continue to suffer instead of admitting their guilt. I think many of you know this. Call me a conspiracy theorist if you must, for all you others, research what they did to Judy Mikovits who found the XMRV virus in 87% of CFS patients, if it was a contamination in the lab they would have all been contaminated. We are being played by the very people paid to protect us.
Someone says CFS/ME doesn’t exist- until you get it yourself!!