Fibromyalgia Fact: I was talking to a... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Fibromyalgia Fact

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I was talking to a Consultant Physician last week from QE hospital regarding shoulder and back pain and he told me a fascinating fact about Fibromyalgia. He told me that Fibromyalgia isn’t a disease more of a disorder because Fibromyalgia does not existing in African Countries and it’s more of a terminology use in the West for pain which Drs can’t give you a defined answer to why you have the pain but the pains are there and Fibromyalgia is just a name for pain that as no medical reason to why you get them.

Admin: Just to say that the user decided to leave the forum after this. While I think there is enough info on this thread to call into question the premise that Africa does not have fibro as a problem. However, as mentioned in this thread there was a research table that showed a lot of countries prevalence details and if I find it I will put it back here.

Just to be clear fibro is found all over the world including Africa(Des)

33 Replies

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desquinnPartnerVolunteerFMAUK Trustee4 years ago

he is wrong on both counts. spoke to a Nigerian professor of rheumatology and a member of his nursing team and they are overwhelmed with cases. I was able to put them in touch with a charity in Nigeria that I was aware of.

desquinnPartnerVolunteerFMAUK Trustee• in reply todesquinn4 years ago

on the other aspect this may help - fmauk.org/latest-news-mainm...

• in reply todesquinn4 years ago

So your a Consultant on the matter in Fibromyalgia he as 40 years experience in his medical field I would like to know what authorises you to tell me he is wrong in both counts from some Nigeria Dr is that what your saying he deals with international board of physicians and he clearly states that it’s not recognised in African countries. Just because you are running these forum how dare you say someone who’s a Consultant in this field for 40years is wrong on both counts

• in reply to4 years ago

Your advice and reply to tell me my physician is wrong in what he told me with I would guess no medical back ground only hear say from Nigeria you can my Consultant a liar

desquinnPartnerVolunteerFMAUK Trustee• in reply to4 years ago

As the chair of the leading UK fibromyalgia charity I would definitely be biased against his opinion but I am also dealing with professors researching this condition. But surely a professor of rheumatology in Nigeria would have good standing on this point?

But if you want to look up Worldwide epidemiology of fibromyalgia you will see some papers that have numbers across the world that would support my position.

I cannot speak to your Consultants experience or standing but this relayed opinion I would confront and would be happy if I see your consultant at a conference to challenge his view on it and put him in touch with others that would contradict this opinion.

Debating viewpoints is healthy.

unthenugu.com.ng/condition_...

onlinelibrary.wiley.com/doi...

ajol.info/index.php/eamj/ar...

• in reply todesquinn4 years ago

No disrespect to the Nigeria Dr/Prof but in my experience the facts and proof in African Countries is far from to be believed on medical grounds because I’ve read many stories that they have numerous disease that the west have denied to get extra medical funding for disease that the country already as but financially can’t afford the medicines or vaccines

desquinnPartnerVolunteerFMAUK Trustee• in reply to4 years ago

If I add that rheumis is Kenya, South Africa and I think Egypt as well say the same (this is personal experience from conversations). And of course the studies also support this. Part of the reason for the studies beyond gathering epidemiological data was that there was a suspicion that vitamin D may have been a facto so countries with the Sun were of interest. Just as prevalent in countries with the sun.

• in reply todesquinn4 years ago

How can you challenge his comments if you have no medical experience in this field only on hear say from African prof or are you a specialist in the field, he works at QE one of the best if not the best leading hospital on rehabilitation and physio in the world with the most modern technical advanced unit in the UK

desquinnPartnerVolunteerFMAUK Trustee• in reply to4 years ago

I can challenge the statement "because Fibromyalgia does not existing in African Countries" on the basis of personal experience talking to professionals in the field including those conducting research. Also on the basis of published epidemiological data that does support that assertion.

I have already pointed you to some further info as well.

I have no medical experience but I have been working with those with it and those researching it (which is more relevant) for close to 20 years.

LisaSnowFMA UK Volunteer• in reply to4 years ago

Hi! This is not about who is right and who is wrong, that was never the point. You are very cute in wanting to defend your doctor but this forum is about seeking universal truth based in DATA. Please relax a bit....

Yes, fibromyalgia is a real disorder ALSO in African. Please read biomedical articles that desquinn provided or this one here:

journals.sagepub.com/doi/10...

• in reply toLisaSnow4 years ago

Wow!!! but it about truth and they claimed extra funding for Fibromyalgia and other common western problems like pneumonia and it was funding a pandemic Ebola issue they never told anyone about until WHO got involved none of the extra funding went to the causes that it was applied for and that is facts and your right about your reply but he as no right to say on both counts he’s wrong because he as 40 years medical experience in physical bone and muscle pain so why would he lie to me about this, ifs that’s the case I will now put a complaint in to PALS NHS biased on what you have both side about the information I’ve received off a Consultant Specialist at QE NHS Hospital

LisaSnowFMA UK Volunteer• in reply to4 years ago

Did you read any of the articles (in links) ? What do YOU think about if fibromyalgia is in those countries or not?

LisaSnowFMA UK Volunteer• in reply to4 years ago

I fully agree with you on the following:1) If proven true, misuse of funding is unethical and potentially illegal. However, how grant recipient used the money has no relationship to if fibromyalgia is real or not. On the side note, if they really used the money to fund EBOLA instead of fibromyalgia research I would be in full support of that decision. Why? because EBOLA KILLS AND KILLS FAST. A government SHOULD prioritize biomedical funding based on severity and impact of diseases.

• in reply toLisaSnow4 years ago

Well it does if they are making it up to get money funding for it, it makes a lot of difference, papers and documents reporting these finding in African Countries is often writ by government bodies for UN help for extra funding for something that doesn’t exist

LisaSnowFMA UK Volunteer• in reply to4 years ago

If they apply funding for cancer research and used that money to research Ebola, would you say cancer does not exist in Africa?

LisaSnowFMA UK Volunteer• in reply to4 years ago

2) There is a big difference between opinion and fact. Your title of the post says FACT and I believe you believe what the consultant said as hard facts. I do suspect strongly that those are his OPINIONS that you just took more seriously. Why? Because you wrote "he (admin) has no right to say on both counts he’s wrong because he (consultant) has 40 years medical experience in physical bone and muscle pain so why would he lie to me about this," (to be continued)

• in reply toLisaSnow4 years ago

Yes it is because a Consultant Specialist at Queen Elizabeth told me, so on that report from him I’d call that a Fact and like the other comments received you bias you finding on reading from organisations outside Europe which personally I take with a pinch of salt, because most paper finding and documentation comes from inside their Government and barely has nothing to do with the medical board

LisaSnowFMA UK Volunteer• in reply to4 years ago

How old are you?

• in reply toLisaSnow4 years ago

Check profile that’s what it’s there for

desquinnPartnerVolunteerFMAUK Trustee• in reply to4 years ago

Peer review should cope with bias. This is one of the studies cited in the image I put elsewhere. pubmed.ncbi.nlm.nih.gov/194...

I have given you evidence of studies, resources and centres. Fibro exists and is treated worldwide including Africa.

• in reply todesquinn4 years ago

You given me data that any corrupted government could make up and I stated and posted something that a UK Consultant told me so on that I’d rather believe or medical board in the UK

desquinnPartnerVolunteerFMAUK Trustee• in reply to4 years ago

I have given you an Italian conducting research and at least 3 or 4 of the other authors are of European / US origin.

But the articles were peer reviewed which means the journals and the peers stand behind them.

LisaSnowFMA UK Volunteer• in reply to4 years ago

Back to my point 2. Why doesn't the admin on this forum have a right to disagree with statements you shared that are obviously questionable? Are you in favor of truth and facts? Don't you WANT to learn something new and correct misinformation? Assuming what you heard was true, having 40 years medical experience in physical bone and muscle pain may give him credentials to have strong OPINIONS but opinions are not facts. He wasn't lying to you by sharing his opinions. Not everything is black and white in the world my dearest. You weren't lied to, I promise.

• in reply toLisaSnow4 years ago

I think I would rather believe him on the medical speech about facts unlike an you response as an opinion

LisaSnowFMA UK Volunteer• in reply to4 years ago

Sigh... i hope you will take time to read and learn if you are open minded enough to do so. And, don't get excited so easily, it isn't good for your health.

LisaSnowFMA UK Volunteer• in reply todesquinn4 years ago

Excellent references!

desquinnPartnerVolunteerFMAUK Trustee• in reply toLisaSnow4 years ago

could not quickly find the tabular data study that has been done on per country prevalence. I have it somewhere saved as I am frequently looking at prevalence stuff.

Will blame fogginess of sitting in the dark with an impending sore head.

LisaSnowFMA UK Volunteer• in reply todesquinn4 years ago

I think what bothers me most about what OP's doctor said (other than incorrectly claiming that it isn't in Africans) is that if no serological evidence is present then it isn't a real disease......That is simply a dangerous attitude to have especially as a medical doctor.

desquinnPartnerVolunteerFMAUK Trustee• in reply toLisaSnow4 years ago

All I can find is this reference on ResearchGate but it is the same table format but not sure if they are just citing relevant info as it only shows Tunisia from Africa. But there is a worldwide table like this that has a large proportion of countries on it.

Africa is normally underrepresented due to difficulties in infrastructure, study design but Nigeria, Kenya, SA and others were represented. As to the validation of the results that's another discussion altogether but our world wide prevalence estimate is 1 or 2 - 5 %.

researchgate.net/profile/Lu...

If it was just a 1st world country condition then that would be very relevant and would allow some focus to be done accordingly but it is not.

LisaSnowFMA UK Volunteer• in reply todesquinn4 years ago

I think it's time to stop responding. You have provided excellent resources for everyone to read. And based on what I see I suspect no amount of logical response will be sufficient to change a mind already boarded up. At least speaking for myself, I give up!

• in reply toLisaSnow4 years ago

No it’s Fact and don’t respond if you don’t like the true just because I don’t agree with what you said about African countries have Fibromyalgia they don’t and it’s not the African people that claim to have it, it all the corrupt African Governments don’t let invalidated paperwork and documentation confuse your judgment that’s where it all goes wrong

desquinnPartnerVolunteerFMAUK Trustee• in reply to4 years ago

Calling it a fact does not make it so. You have deviated into the corruptness of Africa rather than supporting the fact. I think I will lock this thread as it is going nowhere and I am sure people can draw their own conclusions.

If someone had said FACT - the US does not have fibro I would have reacted the same way. You do not need to value my opinion but the research I have shared supports what I have said. Feel free to have the consultant talk to me if you would like. He would not be the firs or last consultant that I have discussed fibro with. If I get a chance I will email Gary MacFarlane at Aberdeen Uni and see if he can find the tabular data I was looking for as he is an epidemiologist specialising in fibro. I would hope you would take his view or supplied info?

desquinnPartnerVolunteerFMAUK Trustee4 years ago

turning off replies as it is becoming circular. There is enough info on here for people to make their own conclusion.

It is Fibromyalgia Action UKs position that fibromyalgia is not endemic to any particular region and that the prevalence world wide varies. However 1 - 5% can be used as an approximation. UK prevalence is 2.9 - 4.7% as per fmauk.org/prevalence